My Journey with Invisible Illness & Mental Health
-May 7th, 2019-
By: Melissa Miller
“I felt like it was the end of not just my livelihood but struggled with my identity because of it as well. ”
- excerpt from the article
- excerpt from the article
It’s well known that mental illness does not discriminate and millions of people suffer with it every day. I personally have struggled with my mental health starting in my teenage years after growing up in an abusive environment through my adult years while in an abusive relationship that pushed me to the brink of suicide. I’m very thankful one day I got tired of it all and broke free from those bonds as I hated seeing the person I had become. I changed my life, my health, my career, my location, and bettered myself only to be hit with an invisible illness, an autoimmune disease, which put me back to square one again. In life there are many things you can’t plan for and this was one thing I did not see coming and it dealt a low blow that knocked the wind out of me. Only later when I found my biological older sibling did I find out that it was in fact genetic and I had no family history from my father’s side until I started asking questions. Answers didn’t change the fact I was mourning the loss of my health, despite the fact I had not been well for some time and had been declining. Getting the actual name of my diagnosis felt like a death sentence. I felt like it was the end of not just my livelihood but struggled with my identity because of it as well. I became depressed and I almost gave up and threw away everything I had worked so hard for because of my illness, including the relationship I had looked so long and hard for. I know I’m not alone in this either.
It’s estimated that 50 million Americans suffer with autoimmune disease which is about 20% of the population, with 75% of them being women. There are millions more suffering from other diseases which are invisible and visible that struggle too. To be entirely honest, my “invisible” illness is only invisible to those who chose to ignore my symptoms, my fatigue, the physical pain I suffer, which makes me feel all the more invalidated by those close to me. When it comes to doctors, often time’s people with disabilities invisible or visible have to provider hop until they get someone to listen to them. Things further get complicated when women of color suffer from these illnesses and have to beg for providers to help them for diseases like Lupus which effect substantially more women of color than white women and is even more complicated to diagnose and treat. According to lupus.org, 1 of every 537 black women will suffer from Lupus and 1 of every 3 of women who have Lupus will have other autoimmune diseases as well. They are also more likely to suffer from lower social support compared to white women with Lupus and have a higher likelihood of suffering from poor mental health as a result. Racial bias in health care is a very real thing that needs to be talked about a lot more.
Fighting doctors and begging for testing personally made my depression worse as I felt like maybe I was overacting and this was the new norm, or perhaps I should just accept it? In trying to get diagnosed I saw 5 doctors, the 5th being my gynecologist who finally tested my thyroid hormones, antibodies, tested me for mono and Lyme disease and we got a hit. My thyroid antibodies were high and I was in the hypothyroid range. The other 4 providers missed checking my T3 entirely and would have seen clear as day why I was having so many issues. Because it went so long without treatment, it’s possible I’ve developed a secondary adrenal disease on top of it which I’m still struggling to get testing for a year later. As soon as I got my first diagnosis I fired my PCP after this and went to another provider who was recommended to me by friends with neurological conditions. So far, this is the best I have ever felt but the endocrinologist I work with is not as helpful as he could be and is being fired as well for someone hopefully more skilled, and he was “the best” in my area.
I am one of the lucky ones. There are so many with my disease who become discouraged and stop looking for answers or they try to find answers from sources other than medical providers. I’ve seen it in the support groups I’m part of. My disease and so many other invisible illnesses destroy lives, families, careers, futures, hopes, dreams, all because the variability of these diseases can change from day to day and sometimes symptoms just don’t improve because they have the wrong diagnosis or treatment. So many outside factors affect them from simple seasonal allergies to stress and the common cold even. You develop “flare fear” where you become scared of doing too much for fear your disease will worsen because of an activity or fun thing you participated in. Interactions with people in our lives and the public with unnecessary comments or them disagreeing as to why they believe a person with a disability isn’t entitled to say, park in a handicapped spot, with their doctor deemed it medically necessary. People who sell MLM (multi-level Marketing) products are purposely taught to target us with false hopes of curing our diseases which some fall prey to and spend hundreds to not feel any better. Added with this, when you get diagnosed with an invisible illness and no longer function at full capacity, often times you have people close to you who will not get it or understand such as friends and family who you may unfortunately lose. My diagnosing doctor told me to forgive them as they are not capable of understanding. I’m very thankful in my time of need though, other friends with invisible diseases and autoimmune diseases reached out and I’ve since had people reach out to me in their time of need or when they have struggles with invisible and visible diseases.
All of this weight added up however. I missed friends who distanced themselves while I was openly mourning, friends who I couldn’t meet the needs of any longer due to my own needs, a mother that never once acknowledged my illness and suffering, and a job which didn’t seem understanding. I started not wanting to get out of bed. Every day became a chore. I started becoming distant from my partner and even thought about running away from him despite the fact he was one of the few people who truly loved me and supported me no matter what. I didn’t have the energy to do things I loved or see my friends which made me feel lonely and saddened. My whole body hurt and nothing I took stopped it, I didn’t have energy to do even basic tasks like cook dinner, and even showering was a struggle some days. Sometimes I’d wake up and inconsolably sob. I hated being alive and living with all of the symptoms I had. My PCP offered me more antidepressants but seeing as how even minor changes in my body could affect me in little ways I declined fearing the worst, that I’d become suicidal again.
Instead, I broke down and sought help with my mourning and the mental aspects of my diseases. I tried several therapists and struggled to find anyone to even understand in the mental health community before I went back to the therapist who helped me overcome the damage done from my past relationship. Not only did she remember me, she was excited to see me which was nice. We talked about my goals and what I wanted to achieve. She acknowledged my struggles finding providers and getting treatment. I started to feel more determined and started pushing my endocrinologist for answers. When he seemed to push back I found another doctor with better accreditation. As my mental health started improving, I started fighting harder for my physical health. Caring people on support forms informed me of what testing I needed done to get diagnosis and shared their own stories. Because of them I now have hope again and have recovered some of what I thought I had lost.
Some however are not so lucky. A month ago today I read a story in one of my support groups about a young mother of two that had taken her life because of the same disease I have. Living with chronic fatigue, chronic pain, and chronic brain fog can change a person. I’ve had brain fog so bad personally I parked on the wrong floor of a parking garage and thought someone stole my car. Minor things can add up to push a person to the brink. Something as simple as listening to someone’s pain and acknowledging it by saying “I’m so sorry you feel this way, this really is not fair.” can go a long way. Also offering to help when someone is having a bad day or flare up can take the pressure off us to get everything done, even if it is hard to accept we need help. Check in on your chronically ill friends if you haven’t talked to them in a while. Encourage them to seek medical help or therapy to also talk about their problems and issues. Facebook is also full of support groups for various diseases where people can interact with others and learn more about their disease medically as knowledge is power. Also, If you are in crisis or someone you know is in crisis, the Suicide Prevention Hotline is open 24 hours a day, 7 days a week at 1-800-273-8255 and now they also have an online chat function.
It’s estimated that 50 million Americans suffer with autoimmune disease which is about 20% of the population, with 75% of them being women. There are millions more suffering from other diseases which are invisible and visible that struggle too. To be entirely honest, my “invisible” illness is only invisible to those who chose to ignore my symptoms, my fatigue, the physical pain I suffer, which makes me feel all the more invalidated by those close to me. When it comes to doctors, often time’s people with disabilities invisible or visible have to provider hop until they get someone to listen to them. Things further get complicated when women of color suffer from these illnesses and have to beg for providers to help them for diseases like Lupus which effect substantially more women of color than white women and is even more complicated to diagnose and treat. According to lupus.org, 1 of every 537 black women will suffer from Lupus and 1 of every 3 of women who have Lupus will have other autoimmune diseases as well. They are also more likely to suffer from lower social support compared to white women with Lupus and have a higher likelihood of suffering from poor mental health as a result. Racial bias in health care is a very real thing that needs to be talked about a lot more.
Fighting doctors and begging for testing personally made my depression worse as I felt like maybe I was overacting and this was the new norm, or perhaps I should just accept it? In trying to get diagnosed I saw 5 doctors, the 5th being my gynecologist who finally tested my thyroid hormones, antibodies, tested me for mono and Lyme disease and we got a hit. My thyroid antibodies were high and I was in the hypothyroid range. The other 4 providers missed checking my T3 entirely and would have seen clear as day why I was having so many issues. Because it went so long without treatment, it’s possible I’ve developed a secondary adrenal disease on top of it which I’m still struggling to get testing for a year later. As soon as I got my first diagnosis I fired my PCP after this and went to another provider who was recommended to me by friends with neurological conditions. So far, this is the best I have ever felt but the endocrinologist I work with is not as helpful as he could be and is being fired as well for someone hopefully more skilled, and he was “the best” in my area.
I am one of the lucky ones. There are so many with my disease who become discouraged and stop looking for answers or they try to find answers from sources other than medical providers. I’ve seen it in the support groups I’m part of. My disease and so many other invisible illnesses destroy lives, families, careers, futures, hopes, dreams, all because the variability of these diseases can change from day to day and sometimes symptoms just don’t improve because they have the wrong diagnosis or treatment. So many outside factors affect them from simple seasonal allergies to stress and the common cold even. You develop “flare fear” where you become scared of doing too much for fear your disease will worsen because of an activity or fun thing you participated in. Interactions with people in our lives and the public with unnecessary comments or them disagreeing as to why they believe a person with a disability isn’t entitled to say, park in a handicapped spot, with their doctor deemed it medically necessary. People who sell MLM (multi-level Marketing) products are purposely taught to target us with false hopes of curing our diseases which some fall prey to and spend hundreds to not feel any better. Added with this, when you get diagnosed with an invisible illness and no longer function at full capacity, often times you have people close to you who will not get it or understand such as friends and family who you may unfortunately lose. My diagnosing doctor told me to forgive them as they are not capable of understanding. I’m very thankful in my time of need though, other friends with invisible diseases and autoimmune diseases reached out and I’ve since had people reach out to me in their time of need or when they have struggles with invisible and visible diseases.
All of this weight added up however. I missed friends who distanced themselves while I was openly mourning, friends who I couldn’t meet the needs of any longer due to my own needs, a mother that never once acknowledged my illness and suffering, and a job which didn’t seem understanding. I started not wanting to get out of bed. Every day became a chore. I started becoming distant from my partner and even thought about running away from him despite the fact he was one of the few people who truly loved me and supported me no matter what. I didn’t have the energy to do things I loved or see my friends which made me feel lonely and saddened. My whole body hurt and nothing I took stopped it, I didn’t have energy to do even basic tasks like cook dinner, and even showering was a struggle some days. Sometimes I’d wake up and inconsolably sob. I hated being alive and living with all of the symptoms I had. My PCP offered me more antidepressants but seeing as how even minor changes in my body could affect me in little ways I declined fearing the worst, that I’d become suicidal again.
Instead, I broke down and sought help with my mourning and the mental aspects of my diseases. I tried several therapists and struggled to find anyone to even understand in the mental health community before I went back to the therapist who helped me overcome the damage done from my past relationship. Not only did she remember me, she was excited to see me which was nice. We talked about my goals and what I wanted to achieve. She acknowledged my struggles finding providers and getting treatment. I started to feel more determined and started pushing my endocrinologist for answers. When he seemed to push back I found another doctor with better accreditation. As my mental health started improving, I started fighting harder for my physical health. Caring people on support forms informed me of what testing I needed done to get diagnosis and shared their own stories. Because of them I now have hope again and have recovered some of what I thought I had lost.
Some however are not so lucky. A month ago today I read a story in one of my support groups about a young mother of two that had taken her life because of the same disease I have. Living with chronic fatigue, chronic pain, and chronic brain fog can change a person. I’ve had brain fog so bad personally I parked on the wrong floor of a parking garage and thought someone stole my car. Minor things can add up to push a person to the brink. Something as simple as listening to someone’s pain and acknowledging it by saying “I’m so sorry you feel this way, this really is not fair.” can go a long way. Also offering to help when someone is having a bad day or flare up can take the pressure off us to get everything done, even if it is hard to accept we need help. Check in on your chronically ill friends if you haven’t talked to them in a while. Encourage them to seek medical help or therapy to also talk about their problems and issues. Facebook is also full of support groups for various diseases where people can interact with others and learn more about their disease medically as knowledge is power. Also, If you are in crisis or someone you know is in crisis, the Suicide Prevention Hotline is open 24 hours a day, 7 days a week at 1-800-273-8255 and now they also have an online chat function.
