Living with a rare disease such as indolent systemic mastocytosis (ISM) can cause anxiety, depression and in many cases, post traumatic stress disorder (PTSD). It’s not easy living each day not knowing how your symptoms will affect you.
For most of us, the symptoms of SM can be unpredictable. For me, it took many doctors and years to figure out what was going on with my body. I was finally lucky enough that a rash showed up on my skin, so I went to a dermatologist and had a biopsy done. Once that showed cutaneous mastocytosis, I was sent to a larger hospital.
Feeling dehumanized due to my rare disease
There, I had a bone marrow biopsy, and finally, after years of living with anxiety, depression and hopelessness alongside many horrible symptoms, I was diagnosed with ISM.
The hospital that I was transferred to was a teaching hospital. I was already embarrassed about the way I looked with the urticaria pigmentosa all over my skin. I never wore shirts or cut tops. So, it hit me hard that not only were multiple people in the room looking at my skin, but it also felt as if I didn’t have a name in that hospital. I was only referred to as “the patient.”
The doctors brought so many medical students in to look at me and kept saying over and over “the patient presented with…” followed by a listing of my symptoms and showing off my skin. I was crying inside but tried my best not to show it. Even today, years later, I can still feel that embarrassment and humiliation.
Coping with medical anxiety and PTSD
The stress and anxiety starts with the lengthy process of getting that diagnosis due to an overall lack of knowledge about ISM. It will also hit you hard as medical bills pile up as you travel from one doctor and specialist to another hoping someone will believe your symptoms and work with you to find the right diagnosis. Even once you get the answer you are looking for, you may find out that there is not that much information on the disease, so you are back at square one.
I remember being told that there was nothing that could be done for me other than treating the symptoms and getting bone marrow biopsies every few years to make sure there were no mutations. This was in the year 2000. My doctors even hit me with the news that it could turn into mast cell leukemia. I had babies at the time, and I left there with the anxiety that this disease was a death sentence, which lasted for years–21 years to be exact.
I do have PTSD because of this disease. I also have anxiety and depression still to this day. I must force myself to leave the house. What’s interesting to me is that when I am traveling, I don’t mind leaving the house. My favorite thing to do is to go to Scotland, and my dream is to make it to Israel someday. But leaving home for the grocery store or the doctor is a definite battle.
The importance of finding community
By 2018, more information about ISM was available on the web, so I did my own research. That’s when I finally started advocating for my own health and learning more about my disease. In 2021, I demanded to be sent to a hospital in Texas with doctors who knew about SM, and that is how I would eventually end up in a clinical trial in Utah. That was the best day for me emotionally. I learned so much about this disease from my doctor, and he began treating me immediately with the drug being tested in the clinical trial. I didn’t feel alone anymore.
All those years living undiagnosed, I felt alone with little family support. My mother was deceased, and both my grandparents that I was so close to were gone. My husband at the time did not take me seriously. My kids were just babies. The only person I had for support was my sister, Aimee. She is still my biggest supporter today, along with my daughter Cassie. Back then, there were no patient support networks because computers were not in every home like they are today. So, I didn’t have a community of other people living with rare diseases to lend their support.
Today, I am so thankful there are plenty of support networks for people living undiagnosed or coming to terms with a new diagnosis. You don’t have to be alone anymore. There is so much information right at your fingertips. I was speaking to a young lady just yesterday that researched her mother’s symptoms she had been dealing with for years. She went with her to a specialist and found out she has a mast cell disease. I was so excited for them both. She started on medication and is improving. How awesome is that?
Losing the battle, but winning the war
There are battles every day in my life. I just wake up and say to myself, “I may or may not win this battle, but I will win the war against this disease. It won’t beat me.”
If you find yourself living with a rare disease, the best advice I can give you is to find an online community, make sure you have a support system, seek help when needed for emotional issues and find a doctor that will listen to you. Never give up hope and always believe in yourself and your ability to overcome any challenge you face.
