The Isolated Life

I’ve struggled with exactly how to say what’s on my heart during this Corona virus world isolation. So this is for everyone that loves someone with chronic or mental illness. I want to help you better understand isolation life. This is also for anyone who is suffering; may it remind you that you are not alone. I would say most people feel like their lives have been flipped upside down. Schools have closed, jobs have been lost, stores are lacking necessities… etc. But today I want to talk about the people who’s lives haven’t changed all that much. This is about the people who live day in and day out in isolation. If you know someone who lives a life of isolation I pray that this time in the world will change how you love and care for the ones who live this reality on a daily basis. When all of this passes and you go back to life the way it was before, try not to forget what it was like and be determined to support the ones left behind. I want to share my experiences as a voice for the isolated. As you read, please try to use your current experiences in isolation as gift to understand the people in your lives better who live this way all the time.
Let me tell you how it typically goes so you can put yourself in your loved ones shoes. You get sick and suddenly your world starts to change rapidly. You don’t know yet that this will never again go away. You assume you will recover. You start going to the doctor and they start running painful and expensive tests. You are referred to specialists and all the while you are getting worse. No one can tell you what’s wrong, it takes months between appointments at times and you spend hours upon hours on the phone with doctor’s offices and insurance companies who refuse to work together. You are in survival mode and you can’t even fathom getting out of the house. Any additional illness could take your life. You have become almost completely isolated. You start depending on constant help from your partner/caregiver and your world has flipped upside down. You are mostly in bed because of pain, you can’t cook your meals, you can’t even do basic care like bathing or going to the bathroom without extreme pain and at times not even without assistance. You and your partner/caregiver are completely mentally, emotionally, and physically exhausted. You both handle the waves of grief of what your life used to be and what you thought it would be differently. You argue over things that one or the other can’t understand. You keep seeing doctors but you can’t work and your partner/caretaker can’t work a regular job anymore so the income slows down and the bills just keep pilling up. You scour the internet for answers and hope. You find treatments centers and tests. You feel like you’ve had a crash course in medical terms and have nearly earned an honorary medical degree. You start to loose faith in many of your doctors because you start to realize how little they actually know about your condition(s). You find yourself instead educating them and being met with blank stares and confused looks while hearing phrases like ” I’ve never seen this before” or “this is extremely rare”. Worst of all are the times they make you feel stupid for the things they don’t understand. You travel out of state to the best hospitals you can find. You live in hotels and go through excruciating painful treatments and tests. You trial medication after medication with promises for results only to be met with life altering and at times life threating side effects. In the beginning you tried desperately to remain “normal” for your friends and family. To fix your hair and put on make up, to dress in normal clothing, to smile and laugh, to pitch in on birthday presents that you didn’t have the money to spend. People close to you know you are struggling but they don’t know the half of it. You open up a little about your struggles but are met with uncomfortable silence or they try to make light of it to cheer you up. They say things like “You look just fine” to them. They say things like “I hope you feel better soon” as if this is just a cold and not something that has plagued you for years with no end in site. When you get admitted to the hospital the first few times people are there. They call you and text you. They send flowers and bring meals. They offer financial assistance and send cards of encouraging words, but as the years go by and the illness continues the people slowly fade away. You are so fragile that a single illness could take your life or send you to the hospital, you can’t see people in the flu season at all so for about 6 months of the year you are even more isolated than you usually are. It doesn’t take long for people to forget you. The invitations stop coming because you always have to say no. The calls and texts stop coming because they keep asking if you are “feeling better” and the answer is still “no”. No one comes to visit. Everyone else’s life continues on and yours feels stuck in a loop of pain and mere survival. You start to blame yourself and make excuses for your friends and family who have all but disappeared. You think “Well I pretended around them so that they didn’t know how bad it was and when I couldn’t pretend I just isolated myself to make them comfortable”. “They are just busy! I’m sure that they actually care but they have kids and jobs and lives to live…”. People send you DMs trying to sell you essential oils and products like plexus and Herbalife. They literally see your illness as a paycheck. You’ve been all over the United states dealing with some of the best centers in the world and all this time you just needed this oil or powder drink?! Sometimes you cry because when you decide to share small pieces of your reality instead of being met with compassion and support you are met with people sending you very unwanted and unhelpful advice about things they don’t know anything about. You try to remember some of them may genuinely want to help and you try to believe the best in them. You remember the times you try so hard to look presentable and force yourself to go to dinner and smile all the while inside remembering how it takes so long to get dressed because you have to sit down and rest every few minutes. How you run fever all day from the inflammation and pain. How your legs turn purple and swollen from being out of bed for too long. How you wear long dresses to cover how skinny your legs have become and even your tights are loose. How you get in the car when it is over and as your partner drives you home your body crashes. You loose the ability to speak or walk so they carry you inside. All you want is to be laid on the bed but you have been in public and your immunes system is compromised so the only choice is for your partner/caretaker to help you change your clothes and wash up before they put you in bed. You have nightmares and night sweats every night. But nobody else sees that part. They only saw you dressed, talking, and smiling… they think “surely it isn’t that bad”. They don’t know that you laid on the hard bathroom floor naked completely limp unable to dress yourself just hours before or hours after. They judge you based on what they see. Going out is always a huge hurdle. The anxiety of getting sick from exposure, the energy it takes to get out of bed to put on sweats and get to the car. You need help and have to take breaks even to do that. there is no hair fixing or makeup applying anymore. Those are luxuries for people that have access to energy that your body no longer possesses. When you get home you always have to sanitize completely. Shoes off at the door, wash hands, change clothes, sanitize phone. Nothing comes in your house without being sanitized. Every time anyone comes into your home you have a great deal of anxiety over what they may be bringing. You try to set boundaries and only allow people in who respect your health needs by not coming when they are sick, people who take off their shoes when they come in, wash their hands immediately etc. But even then it’s awkward and anxiety filled and it’s easier not to have people there at all. Having people in your house is riddled with exhaustion. You have to get out of bed and put on something appropriate, you have to sit up and visit, you have to smile and give mental energy. You want visitors but you just aren’t up for making them comfortable and you are still trying to protect them by looking “okay” even when you’re not. You’ve become completely dependent on a wheelchair and care giver. You can’t wear anything other than loose sweats because your body is in so much pain. “Getting ready” is a thing of the past. The reality is that even though you can’t do those things, sometimes you don’t even want to. You miss wanting to and you want to want to. It’s hard but you just aren’t up for it physically or mentally, because perhaps you also deal with severe depression, anxiety, PTSD, CTSD, OCD etc. Perhaps you deal with daily wishing for death. Begging your heart to just stop beating. You struggle to eat, you can’t gain weight, you cry…a lot. You do your physical therapy every. single. day. You are determined to keep fighting and to keep pressing on in spite of the suffocating pain and darkness that envelopes you. You are stronger than you know. I think the hardest part comes when you realize you won’t survive this life of pain without support so you finally become vulnerable to tell the people closest to you exactly what you need and they never come through. When the depression becomes so severe that you fear suicide is inevitable you cry in anger because you don’t want that to be your story, you don’t want that to define your life. You know you are so much more than the depression and pain and yet you absolutely can not fight this beast alone. You remember all the times the media has blasted news of another celebrity suicide or even times you’ve seen people in your own life react when people die that way. What is it they always say? “If they had just reached out for help…”. That makes you SO frustrated because you know they are only saying that to make themselves feel better. You remember how many times you’ve asked for help, how many doctors you’ve seen, how many medications you’ve tried, how many devastatingly painful treatments you’ve done, how many healthy diets and exercise programs you’ve tried, how many friends and family members who you’ve asked to contact you on a regular basis that don’t. You start to think maybe people choose suicide because the people scream at them through their actions “you are a burden. My life is too busy to call or text you once or twice a week or to visit you by your bedside once a month, sorry”. I’m sure they don’t mean it that way but that is how it feels in your experience. You feel lost in the hypocrisy. Because of your immune system you can’t be around large crowds or anyone who is sick. Your friends and family don’t accommodate your illness. It feels as though they think you are making it up because after all it is invisible and they’ve certainly not seen the worst of it. They continue on with all of their plans as they have always done. It’s been years but you still have to ask if anyone is sick before seeing them because they just don’t remember to tell you. It still isn’t on their mind. They tell you last minute “oh so and so has a cough and runny nose but it’s totally fine. Oh and so and so had a small fever yesterday but no big deal and no fever since then.” They say the sick people will be there and then they make you feel bad when you decide to stay home. They still don’t get it. You tell them it’s totally fine because you don’t want them to feel bad, but you hang up the phone and cry. You cry because you are missing your friends or family, you cry because they still don’t understand after all this time, you cry because it feels like they don’t value your life enough to make sacrifices for you to participate. Then you blame yourself for them missing you and you blame yourself for their lack of education on your situation. It’s a vicious cycle.

Then something like the Corona virus comes along and shakes everyone’s world up…except yours. I mean it effects you in the sense that it is certainly yet another life threatening illness and the economy in general effects your already massive medical debt and lack of steady income. But the isolation and quarantine is your daily life. The sanitizing is your daily life. The social distancing, no handshakes, hand washing, not going in public sick, avoiding people…etc. ALL normal and necessary for your daily survival. The very people who have abandoned you in your years of isolation start posting about how hard isolation life is… and they’ve only been doing it for a few days. They start posting about feeling depressed and anxious. You try and find compassion in your heart because you know what they are going through is a challenge for them and yet deep inside you start feeling an emotion you’d rather not admit your feeling. It’s anger. Anger at the masses. Anger at how blind they’ve all been to the hurting and to the isolated in their lives. Anger that now that it’s affecting them they take it seriously. Before, you were labeled the “hypochondriac”, you were the “dramatic one”, you were “ridiculously over protective”. You try to soften your anger at the unjustness of it all and at the same time find compassion for them. You know that what they are going through is only a fraction of the years of isolation you have lived through and on top of it all you were in it seemingly alone. You weren’t just home watching TV and eating whatever you wanted while doing all of your socializing with everyone else online. You have been home for years in severe pain, mental agony, clawing your way through the days and all the while you are watching everyone else living their normal lives. Going to birthday parties, going on vacations, celebrating holidays, going out on dates, going to school…etc. You want to scream to the world that what they are experiencing is only a small taste of what the chronically ill community faces daily. In fact aside from the economic effects this has actually in some ways made our lives easier! We now feel like everyone is finally trying to protect the vulnerable from illness. We are finally able to participate in “gatherings” online with everyone else. Stores are giving special store hours for immune compromised families. The advice is spreading like wildfire to “reach out often to your friends and family, call don’t just text, FaceTime, send cards or packages in the mail, pick up food or groceries and drop them on their porch, sit outside the window and visit 6 feet away”… etc. They are right…this IS what it takes to love someone well who lives in isolation. You start to wonder if when all this passes if people will remember how hard isolation is? Will they be able to imagine what it’s like for you and the other chronic illness sufferers? You wonder if when it isn’t the whole world in it together, when it’s been years with no end in site, when it includes so much physical, mental, and emotional pain, when you ask for help but the medical world doesn’t have the answers yet and people are too busy… you wonder if they will remember you.
I think some people have the misconception that those of us who live with chronic illnesses are just used to it, that this is just our life. Most of us try to live as normally as we can through the pain. We still have moments of partial function that can look “normal”, but pictures and social media certainly tend to be our highlight reels. We still smile and laugh between moments of tears, pain, and despair. In order to mentally live with this much pain you do have to come to a place of acceptance, but acceptance of your disabilities does not take the “hard” away. I’m going to ask you to Imagine with me for a minute. Imagine if you had the flu. You knew it was the flu and the doctors ordered you to rest and drink fluids until you get better. You are going to be in bed from the body aches, fever, weakness, shakiness, nausea, headaches etc. It would be ridiculous to expect yourself or anyone in your situation to get up, get dressed, fix your hair, put on make up, and go about normal life. Yet if you absolutely had to, on a slightly less symptomatic day, you may even be able to convincingly fake it through an hour of seeing someone without them knowing how miserable you were. What if someone saw you in that one moment and then judged how you felt at your worst, based on how you looked when you were pushing yourself way past what you thought you could on your “best” day? You would get home and crash into bed, you probably slowed your recovery down quite a bit from going out when your body didn’t have the strength. You are in pain, your body is covered in sweat and chills. Now imagine this continues for days, weeks even. You aren’t getting well. Doctors are getting confused, they start poking and prodding you, running tests and looking for answers. You get nowhere with figuring things out. Some doctors send you to other doctors but referrals and insurance takes time. Meanwhile you are still miserable, people in your circle bring you soup and flowers for the first few weeks, eventually that stops because they can’t do it forever. People know you don’t feel well so they don’t invite you places, and they don’t call or text so as not to be a bother. You wish desperately to hear that people are thinking about you and praying for you but you are too weak to reach out or respond when they did weeks ago. Months pass and you wonder when you will find relief. This cycle continues but so does life. You can’t live on hold forever so you start trying to do some housework in your weakened state, you try to open your own curtains, your body fights you every step of the way. You collapse on the floor, you’ve lost consciousness. You call your partner home from work to help you back to bed. Yes, by this point your partner/caretaker has had to go back to work to pay the bills that just keep coming… now more than ever with all the doctor visits and hospitalizations. Years go by, you’re still sick, but you are somewhat adapting to being miserable all the time. You force yourself to do things that need doing, if this was temporary everything could be put on hold but this isn’t temporary anymore. You have waves of grief, of anger, of immense sadness over what was and what you thought would be. You are lonely, so very lonely, people have all but disappeared. Some slowly, some quite suddenly. Some truly cared but didn’t know what to say so they didn’t say anything at all, some couldn’t understand it so they thought you were pretending and blamed you and walked away. People want you to get over it already, They are confused as to why you still complain and talk about it. After all, it’s been years. They roll their eyes at the attention they assume you are seeking. You find yourself in therapy sobbing over what is and how it is perceived. They guide you to acceptance. “It just is”. You still have emotions and battles but you have to live the best life you can in spite of the disabilities and pain. Not everything makes sense. People think it gets easier over the years but actually the longer you are sick the weaker you become and the deeper the mental struggle goes. Do you learn ways to help cope? Yes. Do you find things to help at times? Yes. Does it ever go away or get easy? No. I ask you to imagine with me one more time. Do you think day 5 of the flu is worse or day 3,652?
So in this time of isolation if your world has been a bit flipped upside down I am choosing to find compassion in my heart towards you. I desire this to be a time of educating the whole world on how to better support the isolated! I choose to find something positive and to choose hope that good will come from this hard time in the world. If we all choose compassion for other people’s lives that we can’t understand then this hardship can make us all better. We MUST do better to love the people that are hurting! May this time of forced slowing down remind us to never be too busy to help support a hurting friend. May this time of painful isolation remind us to be more consistent to visit and check in on those that are always isolated. May this time of adjusting our events to include everyone continue when there are only one or two who need adaptions to participate. May we show them they are loved and valued in the midst of their suffering. May we remember to show them that they are worth fighting for. We are all fighting battles no ones knows about. Let’s all choose to be kind and believe each other and support each other. Let’s all lay aside judgement and eye rolling, and assumptions. We really only know our own story. Choose love.
Keep Fighting,
Dawn Harris

Keep Pushing For Awareness

I haven’t written in a while. Those of you who struggle with mental illness probably understand how hard it is to be consistent with things when your mental health goes up and down so much.

I honestly was afraid I wouldn’t survive after my last TMS round of treatments ended. The depression got so bad. I was looking for a place to check myself in but I didn’t need a psychiatric ward I needed more support. Unfortunately the other places like that don’t take insurance and usually cost over $20,000+. As we can barely scrape by as it is that isn’t even an option. I find myself extremely frustrated by the system. The resources and support or even awareness of mental illness is seriously lacking! And the last thing someone in that state needs is to hear “we can’t help you because you don’t have enough money” (when you can’t work because of how sick you are in the first place!) It’s basically like a final confirmation that all the lies your brain is telling you (ie there is no hope, you are a burden, there is no help within your means etc.) is true and you feel like you have no choice or hope. It’s a devastating place to be mentally.

I am back into TMS again right now because insurance pays for a 36 session round and then will not cover anymore treatments for 3 whole months. Which in my case is similar to being on a medication that really works for roughly 3 months and then being forcefully removed from said “medication” for the next 3 months and dealing with extreme depression and feeling suicidal, even reaching a catatonic state. And yet insurance still refuses to cover TMS for regular use. The FDA is working on approving it for regular use and I am clinging to hope that it happens soon. I’m so afraid it will be too late for some of us.

Im looking into a home device that uses electric current to treat depression. It’s called the “Alpha-Stim”. It says it is roughly 1/1000 of the power of ECT. I had ECT done and had relief from my depression, anxiety, OCD, and even my fibromyalgia. Unfortunately, I also experienced terrible side effects and the doctors felt it was unsafe to continue with ECT. I’m excited to try this at home device to see if it helps since it works in a similar way but is much less invasive. I have my doubts that it will be successful with my severity of depression but I’m hopeful!!! Of course insurance won’t cover it and it is around $1,000. I’m not sure when we will be able to get it, but I look forward to trying it when the time comes!

Fellow fighters, you are seen and so brave, and so strong. The world has NO clue what you fight to survive!! It is so deep and so real. I’m linking arms with you as we stand firm.

Keep fighting,

Dawn Harris

A Snails Pace Matters

I took a walk this morning!! Such a huge thing when I have the desire to go AND the ability to go at the same time! My husband is at work and yesterday He was also able to work all day without coming home to make my lunch (which is huge!). My body still aches and runs fever from inflammation and from an over stimulated brain, my heart rate is still far too high causing blood pooling in my legs and feet making them swell, my headaches still persist and I’m still in bed most of the time using a heating pad to ease the aches and an ice pack to keep from over heating. I may have had my young daughter bring me 2 slices of cold pizza for lunch yesterday because I couldn’t even walk to the refrigerator and get it and put it in the microwave. But that’s because I spent the energy I did have on crafts with her and much needed paperwork/research that needed to be done for my husband and talking to 2 separate doctor offices to schedule another appointment and some needed testing for me (it’s all about prioritizing the little bits of energy).

This thing called life is really hard, tons of mental and physical limitations, but truly, this is the “easiest” it’s been in 4 years and I WILL NOT take the little things for granted. I refuse to forget where I’ve been and where I can easily be again. This journey of chronic illness and mental illness never goes away but it does go up and down. The fear of the next down is a constant threat to steal the joy of the ups. Not only that, but sometimes I have to look really hard to find “good” in the midst of so much hard. That’s one of the reasons I started focusing on the fact that “the little things are the big things”!

When my daughter was diagnosed with an extremely severe and terminal heart condition my whole perspective on life changed. The things that used to matter didn’t anymore and the little things seemed huge! We just focused on surviving and every moment and every milestone was an un-promised gift. We’ve continued to have multiple unexpected challenges but truly the perspective of cherishing the little things has been an important piece to fighting to keep moving forward. I can get discouraged at how sick I am and my major limits and then I remember that 2 years ago I couldn’t even take a shower…as in, the idea seemed unreachable! Most days I was never even able to leave my bedroom. I needed help for basic care. I was so sick that I had to go out of state and I spent 2 months at the Mayo Clinic getting intense testing and invasive (painful!!) treatments. I got pneumonia and went septic (it was scary, although I had excessive memory loss from treatments during this time which is a whole other set of trauma). I was so fragile and so so so sick. Now I shower regularly and while it’s hard it’s also just something I do without thinking much about it!

So ya, it may have taken me years to get here and I may still have a life that looks significantly “different”, I still need tons of rest, I use a wheelchair when needed, I go to therapy, I have to have regular treatments, I see a lot of doctors, I take meds, I lose the ability to walk and talk occasionally, I fight the darkness of mental illnesses, etc. But I also feel some new strength, some new hope, I get to spend more quality time doing fun things with my daughter, I can (usually) take care of my own basic needs (except for food), I can run short errands on good days, I can drive on good days, I can do light exercises, I can help my husband carry the load, I can help and encourage friends, etc.

So now do you see why the little things are such big things to us? We fight for our lives and the little moments are what give us glimpses of the reason we fight! They refuel us to keep going, they gives us tastes of heaven. They remind us that there is good in the midst of pain. We find purpose when we look forward. They say “not to look back because you’re not going that way” and boy is that true when you are talking about things you can’t change, BUT when I start to feel discouraged by my slow progress I look back and, as it turns out, even when you’re moving at a snails pace, if you keep going you can cross a lot of ground! Keep going friend maybe one day you’ll take a shower without even thinking about it and then it will hit you, “I JUST TOOK A SHOWER!” And that is so worth celebrating because “the little things really are the big things”!

Keep Fighting,

Dawn Harris

Transparency in a World That Tries to Silence You

Can we talk about transparency for a minute?

Gosh this is a tricky word or rather a tricky concept.

There are usually two scenarios in those who really struggle with their mental health. One are the people that are open and vulnerable and share their struggles with friends, family, social media, and even strangers. The second are the people who try to hide it, to keep it in, to keep going looking as normal as possible, and never letting anyone know that are fighting a raging mental battle. Now, yes there are lots of variations and combinations of the two scenarios I just described and truthfully most people are a mix of the two, but they at least tend to lean strongly one way or the other.

The people that lean toward the first scenario are often labeled “needy”, “attention seeking”, “dramatic”, “weak”, “negative” etc.

The people in the second scenario are often labeled “strong”, “positive”, “normal” etc.

Here’s the problem. No matter what we do, we can’t make everyone happy. As you can tell from my blog and mental health advocacy, I lean strongly to the “bare it all” side of the road but I do believe there should still be a bit of balance.

I had someone who reached out to me privately to ask for some advice based on my experience in the mental illness fight. I know this person has struggled a great deal with mental illness and after talking to them more, it was apparent that it was a far greater struggle than I had known. To look at this person’s social media and life you would really think they had it all handled and here’s the tricky part, this person even shared about some struggles publicly (but only rarely and certainly not even close to sharing the extent of the problems they are facing). I was saddened that even I, a fellow mental illness sufferer couldn’t see through the “good”.

The problem with this is that there is a difficult line to find between putting up healthy boundaries by protecting your privacy and not airing your dirty laundry,  and putting up a false front by coming across as okay through fake vulnerability (sharing only the smallest bit of struggle to get you some support but not enough to make anyone uncomfortable or be labeled “needy”). Now, I know some people are embarrassed or don’t share just because they think sharing openly is unnecessary, but I do know this, if I hadn’t been sharing openly, not only would I feel completely stifled trying to fake my way through life surrounded by fake “friends”, but I wouldn’t have been accessible for the multiple questions I get about treatment and getting help because no one would know they could come to me. Because I share openly, people know I’m not uncomfortable talking about mental health and they can be vulnerable with me! There is nothing more rewarding for me in this journey then helping someone else, it really gives my suffering purpose!

If you are suffering and fighting in silence, I don’t blame you in the least, in fact there are a lot of times I wish I could go back and undo all my openness, because to be quite frank, as maddening as it is, I would have so much more “support” if my story wasn’t so “messy and complicated”. But every time I get to help a fellow mental illness sufferer or every time I get a true friend, I realize that as hard as this road of vulnerability is, it’s worth it.

I’ve written about suicide a few times before, but If somebody takes their own life or decides to tell their story years after the severe struggle, the response will be what it always is “Why didn’t they ask for help?”,  ” I had no idea they were struggling”, “they hid it so well”… etc. This makes me crazy! Not only is that shaming someone for being sick, but they are also taking the guilt off of their own shoulders (for not accepting mental illness) and placing it on the person that was only in that position of isolation because they where trying to make society as a whole comfortable by not talking about it! Seriously, you talk about your mental illness, you’re “labeled” and if you don’t talk about it you “should have”. There is no winning.

Look, as a mental health advocate I encourage openness but I can not and will not say it is the easy road. And all those people who make those ignorant comments after someone is gone… they actually aren’t there when you “ask for help”, their behavior doesn’t change when they “know you are struggling” (unless you consider distancing themselves from you as change, that they will do). It’s pathetic. Why would someone want to be open about their struggles when all it gets them is isolation, being misunderstood, and a label of “attention seeking”, “negative”,  “needy”, “dramatic” or “weak”?

I totally get the appeal of only sharing the smallest part of your struggle so as not to scare away the friends you do have. But once you start to really share the hardest parts of your mental illness it’s only the fake ones who fade away. The true friends will lean in and learn to understand. They will be the ones to come in and lift you up.

You don’t have to share your story, but man, I’m passionate about it. I know so many people are suffering in silence and if we all share our lives and our stories, maybe someday society will change, maybe we can make a positive difference for those who come behind us. Our children and grandchildren may grow up in a world where a mental illness is respected, treated, and supported instead of hushed, mocked, and ignored!

I’m not saying you can’t still be lighthearted and have fun with your friends and family. Please do! People need to see that mental illness doesn’t have a “face” that you can laugh and have fun and then be suicidal and crippled by anxiety later the same day! They need to see the “downs” too, not just the “ups”. You don’t have to tell the whole world, you don’t have to be a public mental health advocate to change the world, just start with your circle. Challenge yourself to be uncomfortable enough to be vulnerable. I strongly suggest that you find an amazing therapist to be a consistent stable support system for you during your mental health journey. Not only will it help you grow and develop healthy tools to fight the darkness, but it will also help you when you feel rejected from people you thought would be there for you that disappear when you are honest.

I’m also not saying that you have to share everything with everybody. There are a lot of things about me that you all don’t know. Things that are personal that aren’t relevant to my advocacy. There are things you should keep private that only need to be discussed with a therapist or a close safe circle. Those aren’t the things I’m talking about. But if you are struggling deeply and you feel like you can’t say anything because it will make the people around you uncomfortable…share it. It’s okay to be uncomfortable. That’s vulnerability, that’s working toward finding who your true friends are and working toward changing the world for a better future.

Keep Fighting,

Dawn Harris

Less Stable Ground

Ha. So much for that more stable ground I’d been enjoying.

I am unfortunately back on the downward swing here with my depression.

I know that my brain is telling me that it’s time to go back for more TMS treatments. I’m learning to listen to my body and to read the signs of decline earlier than I used to. Over the years of treatments I’m really getting a better understanding of myself and how I operate. But it’s still hard for me.

I struggle to get help when I start slipping like this. First, I think “I’ll just wait a bit and see, it might just be a bad day and I’ll probably feel better tomorrow”. Second, I think, “surely I’m not already declining, it’s probably all in my head, maybe I’m not trying hard enough, no one is going to believe me that I’m going downhill yet because they can’t see it”. The third thing that keeps me from getting help is money. Treatments cost money and we are drowning in debt already because of my many health issues. On top of all of those “reasons” not to reach out, I also almost immediately start that intense self blame game and feelings of “not worth it” rush over me. It’s really hard to fight for yourself when you don’t feel worth fighting for and you feel like a burden, and you feel like you’ve let everyone down, and you are utterly and completely mentally exhausted.

But I am reaching out. Because I’ve been on this ride before and it doesn’t get any better on it’s own. And as bad as this feels, it gets worse…much much worse without help. So I’m calling my doctor’s office first thing in the morning and going in for a treatment to hopefully stop this decline in it’s tracks and head back north.

My heart for this blog is to be a place where people feel less alone in their struggles with mental illness or chronic illness and also a place to educate those who are supporting loved ones with mental or chronic illness. My goal is to be 100% honest, yet my fear is that in sharing the absolute truth it may be discouraging to my readers. For example. For some who struggle with mental illness all they have to do is reach out to a doctor, start a new medication for about 6 months maybe a year or two and then wean off and continue on with their lives and the medication works wonderfully! I’m really happy for those people but that’s just not my story.

I cringe when I hear people who have had that experience or even those who haven’t but don’t really “Get” mental illness, telling people to reach out for help, telling them there is a medication to help…etc. I cringe because that’s not always the case. Yes, reach out for help, ABSOLUTELY. But sometimes you have to actively seek new treatments for a decade and still struggle every.single.day. Sometimes, they can’t get it under control like they all promise and sometimes all the commercials and well meaning friends (and even strangers) will tell you what it will be like and they couldn’t be more wrong. And friend, that is painful. Mind-numbingly painful. You start to wonder what your problem is? Why isn’t it working like it’s “supposed” to. And unfortunately you may even have family, friends, and most devastatingly, doctors who blame you for they way you feel. Shaming you into believing you just aren’t trying hard enough, or that you just need to be more positive, or try to exercise and eat healthier…etc.

Friends! These ideas are all good things, but even the very best things cannot cure mental illness!!! They can assist us. A healthy body helps when we are trying to heal our brains, but if the only “mental illness” they’ve experienced can be fixed by a brisk walk and drinking a kale smoothie and having happy thoughts about fluffy puppies then I hate to break it to them, but they didn’t have depression, they had a bad day! Again, these are tools to keep in your mental health toolbox, but they can not cure an imbalanced mind and anyone in your life who is making you feel less than just because they don’t have the answers to help you should not be part of your care team.

So if you’re new to the mental health journey, perhaps your story will be easier than some. Perhaps the first medication you try will bring you relief and your life will continue on. If that is the case I celebrate with you and recognize your struggle is still significant and you are brave!

But if you aren’t new to this fight. If you chose to be brave and reach out for help many years ago only to have that “help” fail you over and over again, if you have been on all the medications, going in for all the treatments, having all the tests run, bouncing from doctor to doctor until they have exhausted their resources and yet again come up empty, and your uniquely complicated brain still leaves them all scratching their heads in confusion, then this hug is for you. This big tight hug, is to remind you that it isn’t your fault that your brain is wired differently than the others, reminding you that with new medical advancements there will always be hope, reminding you that you are the strongest of the strong even though I know you feel so.very.weak. The truth is you haven’t given up, you are still breathing and that is a victory beyond what most people could ever fathom. I see you. I see you crying because you really blame yourself because it seems to get better for everyone else. I also know you know deep inside of your heart that you ARE doing the very best you can and you couldn’t fake this away for anything in the whole world. You are a warrior.

Keep Fighting,

Dawn Harris

More Stable Ground

Hi friends, I’ve been missing writing in this space. My computer went down but we are up and running again and I’m grateful to be back.

I don’t know about your personal journey with mental or chronic illness but mine seems to come in waves. Up and down, quite dramatically, even from one day to the next. The down being the deep that is the worst kind of pain and the “up” being less actually “up” and more “less severe”. Mountain tops and valleys. Only my “Mountain tops” are really just solid flat ground. I don’t really get to a happy place but “more stable” feels quite “happy” compared to the valleys. Does that make sense?

I don’t have bipolar but I do have severe, chronic, treatment resistant, depression that is debilitating. And I have a lot of up and downs that come along with it. I’ve tried so many medications and nothing helped at all. I’ve had ketamine IV infusions (a fairly new treatment of depression using the anesthesia drug Ketamine at low doses), I’ve also had 14 sessions of ECT (Electroconvulsive therapy or “shock therapy”), and finally I’ve landed on TMS (Transcranial magnetic stimulation) treatments.

Out of all of the treatments and medications that I have tried, the only two that had any positive effect whatsoever has been the ECT and the TMS. Unfortunately the ECT was quite invasive, EXTREAMLY painful, and left me with pretty severe memory loss so the doctors said it wasn’t safe to continue. That is when we switched to TMS. My experience with TMS and the positive effects from it have been more gradual than with the ECT (which was more “on” or “off” for me). But it wasn’t until my last two rounds that I really started to get the stability that I’ve been craving!

For most people getting TMS you go in daily Mon-Fri for about 6 to 7 weeks and get the pulses on the left side of your head for depression and the right side for anxiety. They usually give 5000 pulses at a power level of 120 (but go up to 140). We realized with my third doctor that these settings were just overstimulating my brain causing instability. So we set my own protocol. Only treating the left side, only 4000 pulses, and only up to a 90 power level and it has been so much better! Best piece of advice in this department is FIND THE RIGHT DOCTOR! My first doctor was pretty absent and my second doctor was a major pill pusher and kept thinking the higher the power and the more pulses the better. The doctor I have now has been amazing at listening to me while I listen to my body.

I just finished my most recent round of TMS two days ago so now I get a two week break before I go back in to see my doctor and get a maintenance treatment. I do have to go in for maintenance which is a bummer but if I don’t keep up with about 1 treatment a week then I slip back in the dark hole pretty quickly. It’s amazing how GOOD “okay” feels in comparison to the deepest darkest daily battles of depression. TMS isn’t a miracle cure all, or a one time treatment thing, but it has absolutely changed my depression battle for the good and makes what used to feel impossible feel much more possible and for that I’m so thankful.

It took about 7 years of ACTIVELY trying to find a depression treatment that worked for me… I wanted to give up a few thousand times in that time. Doctor after doctor offering hope, even promising results, but time after time every attempt failed. I’m still moderately to severely depressed everyday, but there is a bit of a lightness to parts of some of my days that wasn’t there before. There are tinges of motivation or anticipation that weren’t there before. It’s progress, and for the first time in 7 years it’s somewhat consistent. I plan to maintain the maintenance and then in 3 months time go in for another daily (6-7 week) round. Hopefully I’ll be able to build on what we accomplished this round!

Carry on my warrior friends, we are in this together even though it sometimes feels so frighteningly lonely. You are brave and your life is worth fighting for! Don’t give up on finding hope! New medical advancements are on the horizon we just have to hang on a little bit longer!

Keep Fighting,

Dawn Harris

Deep Darkness

I want this blog to be a place where others who struggle with mental illness and or chronic illness, can find support and encouragement, and also a place where others can learn about mental illness and chronic illness, but most importantly a place where suffering hearts don’t feel so alone. Mental illness and chronic illness have to be the most isolating things in the world. The up and down, the ability to function one day and the loss of function the next, and unless you’re the one feeling it, it’s very hard to understand.

I don’t know about you, but I find myself in a constant state of desperately trying to convince the world of the reality of the depth of the darkness that is mental and chronic illness. Sometimes I wish my illnesses could be seen on the outside, more than just looking tired or frail. Big, deep gaping wounds, bruises, dark circles. Sometimes I want to look as bad as I feel, my bloody body, scraping over glass and hot coals, unable to walk or stand. It might sound dramatic to those who haven’t experienced this kind of mental pain, but some of you are nodding as you read along because you get it. You really get it.

Some days the depression is so deep that I can’t even speak. I can’t even sit up. I can’t eat or drink. Somebody lays next to me, physically holding me so I’m not alone, so that I can feel something, anything, as the tears slide out of my eyes. Sometimes it’s a bit of a steady flow of tears as the hours tick by, other times it’s body wrenching sobs. And yet, I may have seen a friend or stranger just the day before or the day after. I’m sure I looked a little tired without make up and wearing sweats but I’m also sure I smiled and carried on a polite conversation. I may have been honest when you asked how I’m doing, I may have said, “I’m okay, I’ve been struggling lately with depression but I’m getting the help I need through therapy and treatments”. But they don’t have a clue. If I’m there, even if I’m honest, they can’t possibly grasp the depth of the struggle. If I’m not there and say, oh I’m sorry I can’t be there I’m not feeling well. Again, they can’t possibly understand what that means, because even the best intending humans can’t seem to grasp what they can’t see, and unfortunately you can’t see brain torture.

The reality is deep, dark, and ugly! Depression is so much more than a bad day or a negative attitude! It is when your brain steals your reality, fills you with only lies and pain, you can’t feel any connection to those you love most, you become so weak, you become numb to everything except pain, and you truly wish, even beg, to die. It is a beast. It is overpowering and all encompassing. If you are reading this and nodding along because your heart has felt this deep darkness too, I’m so sorry!

The thing we must hold onto is that the darkness does lift and even though, perhaps your deep depression, like mine, is often reoccurring. We are stronger then we feel. It’s vital that you have at least one person that you can tell the darkest parts to, someone who sees it with their own eyes. Someone who will laugh with you when you laugh and cry with you when you cry.

I’m going to end today’s blog with this poem I’ve recently come across that was amazingly accurate of my experience on this journey. The isolation is real and at times so painful it’s hard to continue on. But despite the suffocating depression, I’m still breathing and so are you!

Solitude

BY ELLA WHEELER WILCOX

Laugh, and the world laughs with you;

Weep, and you weep alone;

For the sad old earth must borrow its mirth,

But has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound to a joyful sound,

But shrink from voicing care.

Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure of all your pleasure,

But they do not need your woe.

Be glad, and your friends are many;

Be sad, and you lose them all,—

There are none to decline your nectared wine,

But alone you must drink life’s gall.

Feast, and your halls are crowded;

Fast, and the world goes by.

Succeed and give, and it helps you live,

But no man can help you die.

There is room in the halls of pleasure

For a large and lordly train,

But one by one we must all file on

Through the narrow aisles of pain.

Keep fighting,

Dawn Harris