I am about to share a bit about myself that may be scary or shocking. I am certainly exposing some darker sides of my past that some would consider too private or forbidden to share, but I do it to show you that there is always light on the other side of darkness, you just have to be willing to reach out for help.
In my younger years, teens into early twenties, depression struck me very hard. I sought help but ultimately I was just in a very dark mental state and I tried to commit suicide twice, about 2 years apart. For me, being diagnosed with depression as a disease was important. I was able to understand that parts of it I could not control and that medications can help. There was also another factor on top of clinical depression, situational depression. I was going through a very tough transition in my life.
Later, around 2003, when I was first being worked up for muscle weakness and never-ending pain, there were two things that held up a myositis diagnosis. First, at that time, doctors didn’t believe pain was associated with myositis. That has since been found to be incorrect. The second reason was having a history of severe depression and suicide attempts. Even in the healthcare field, I was stigmatized and was told the illness “was in my head” from a very prominent doctor at a University Hospital. When my primary care physician received that report, he refused to move further. I was devastated and wondered if I was really making myself sick.
At the request of my primary care doctor, I went to see a psychiatrist, who after careful consideration determined that my symptoms and my illness were not a result of mental health, psychosomatic illness, but rather an actual physical illness. With that clearance, doors once again opened to continuing to search for a diagnosis.
After an almost 3-year battle and about 15 doctors later, a new, local small town doctor officially diagnosed me with the rare disease, Polymyositis. On my first visit with him, he asked if a muscle biopsy was ever performed and it hadn’t been. After visiting all of the big time hospitals no one ever suggested a muscle biopsy. Once the biopsy results came back it clearly showed polymyositis.
Finally having a diagnosis, I turned to the Internet to research. The information I found was scary, to say the least. I didn’t know at the time that the information available was somewhat outdated, sometimes unreliable, and often frightening, especially when reading about mortality rates. After my initial research and thinking about how I was feeling both physically and emotionally, and not having the ability to talk to others living with the same disease, I wanted to take my own life again. I was back in that dark place I had been in before.
When I thought there was no hope going forward due to this rare disease, I honestly did not know what to do. Emotionally I felt lost, alone, confused, and isolated. I had stopped working due to pain, weakness, fatigue, and constant hospital admissions. For weeks on end, the same four walls surrounded me and I didn’t want to do anything but end this awful existence. Loss of my independence also played a huge role in my mental health. Depression had me down and had me in a place I didn’t think I could recover from again.
Myositis and depression were not only affecting me, but they were also affecting my parents, my partner, my family members, and friends. The fact that most of my friends stopped coming around or even calling made it even worse for me emotionally. I needed and wanted, that companionship and laughter. I also had extreme feelings of guilt about people taking care of me. They were giving up their time and energy to help me and it was unthinkable in my mind, even though I would have done the same in their position. And, I felt that no matter how much I explained it, no one would ever truly understand what my life was like living with myositis because on the outside I didn’t really look sick. This is a part of a battle living with invisible illnesses.
I knew I was in real danger and that I had to get help quickly. I had plenty of time to think, to say the least, and it finally hit me, “Do what you have always told others and what you did in the past. Get professional help!” And, I did just that. I called a mental health professional to start therapy and a close friend that had stuck around. I talked through my feelings and the subsequent reasons I had to live and it helped quell my suicidal thoughts for the time, but the depression lingered. Sometimes just having someone listen to us while we pour our souls out can be a huge relief. I also began to journal again. I had journaled for years before but it became too hard to write for long periods due to muscle weakness so I gave up. Thankfully there are apps and dictation programs that can now make journaling much easier.
When I thought long and hard about my diagnosis, its rarity, the symptoms, and the loneliness I felt, I tried to find others like myself, but I wasn’t able to find anyone. I remember one day becoming so frustrated after searching for others with the same disease that I had an epiphany of sorts. I realized that I had a chance to enforce change and take action rather than live in constant fear and self-pity. That day, I got on my computer and created a Facebook support group called “Polymyowhat: Understanding Myositis.” (I later realized that even though the name “Polymyowhat” was catchy it didn’t encompass all the types of myositis, so we later expanded the name to be more inclusive.)
Creating that support group was where things truly turned around for me. Not only was I able to chat with others about the pitfalls of myositis, chronic illness, and depression, and many other things, I also heard their stories; stories of those living with myositis for 15 plus years! My initial research hinted that patients lived for 5 years or so after diagnosis (which is not completely correct), but here were people functioning, living their lives, and providing me with hope and even laughter, ultimately saving my life by sharing their experiences with me. I finally knew I was not alone.
I once again had a purpose! In that group, and the subsequent groups now under the Myositis Support and Understanding Association, we shared fact-based educational and informational materials. We became a family in the group, often checking in on each other. I remember when I was on high doses of prednisone chatting in the groups late into the nights and early mornings. We had members from around the world so someone was, and still is, always available in the groups. I heard a variety of stories, some directly related to the physical complications of myositis, but more importantly, we had a group that was supporting each other through the emotional parts of the disease as well. This is when I realized that I had a calling and set a long-term goal to form a patient-centered nonprofit organization. It was five years later when that goal was reached and the Myositis Support and Understanding Association was born.
“Sometimes just having someone listen to us while we pour our souls out can be a huge relief.”
From that small Facebook group, that I started at a seriously low point in my life, have come great things. Had I chosen to end my life at the beginning of my diagnosis, I wouldn’t have been around to see the now, the good. I would never have reached the goals I set and started a nonprofit by Myositis patients, for Myositis patients. I would not be here today to share my story of challenge, hope, and ultimate success with you. Nor would I have been here to help others through their pain, both physical and emotional. MSU has been a true blessing to me personally in that I not only found a way to help others; I found a way to also help myself.
Some things I came to realize over time:
- I am strong inside and have worth outside of my physical abilities.
- I can do things to help myself like exercise, journal, meditation for pain and relaxation, open up and talk about my feelings.
- Life is worth living especially when you find something you are passionate about.
- I need to set small goals and actively reach for them.
- Talking with others who are going through the same experiences is truly helpful and helps to keep my depression from taking over.
The members of the MSU support groups have played an integral role in my continuing decision to live each day and to continue helping others whenever I am provided the chance. That is not to say that my depression is gone. I still face periods of severe depression, and likely always will, but I am more informed and educated now and I know the signs to watch for and what to do when I get in a dangerous place in my mind.
“We had a group that was supporting each other through the emotional parts of the disease as well.”
Today, I am happy I didn’t give in to my feelings of hopelessness and thoughts of a life filled with suffering resulting in my potential suicide. Instead, I made a decision to live the best life I can with what I have, which became possible through an intense grieving process that took a couple of years and with the help of a counselor. I can now honestly say I have a great life and I continue to live it to the fullest, despite my pain, despite my weakness, and despite my depression. Of course, this is not to say that times get tough and I have to slow down and not overdo it.
I will admit that when I sat down to write this, I had doubts about letting everyone know about my depression, suicidal thoughts, and attempts. My hesitancy stemmed from a simple question: What would people think of me? I thought for a long time and this is what I hope. I hope others realize that I am just a human being who was, and often still is, going through a very tough time in which things seemed uncertain. I hope they would be proud that I am telling my story to try and provide hope to others who are depressed and/or suicidal because they are living with a chronic illness that is rare, disabling, often isolating, and, for some, very painful. I hope they realize my story may help someone else do what I did and reach out for help.
I know it is not always easy to reach out when you are depressed. I personally know four close friends who lost their battle against depression and despair through suicide and several others who attempted it. I mourn them each and every day, and of course, I always wonder why they didn’t call me first.
“My message to you and others that are in the same place is that things do get better. Sometimes not the way we wanted, hoped or expected they would, but in many ways, things do improve and life becomes worth living.”
My message to you and others that are in the same place I was is that things do get better. Sometimes not the way we wanted, hoped or expected they would, but in many ways, things do improve and life becomes worth living.
Know that you matter and you are worth it. And yes, you deserve to live a good and happy life and that it is possible when living with the rare disease, myositis.
If you are feeling or having suicidal thoughts please don’t try to handle them alone. Please call a friend and call a mental health professional. If you are in immediate danger, please call 911 in the U.S.
You can also call the Suicide Prevention Lifeline at (800) 273-TALK (8255) and visit their website at www.suicidepreventionlifeline.org.
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