Hi, I’m Matseka. I am 21 years old and from South Africa. My health journey has been a rollercoaster for as long as I can remember. Growing up, I was constantly in and out of the hospital. Because I got sick and injured so easily, doctors often misunderstood me—thinking I was just a naughty child, reckless, or that my home environment was unsafe. The reality was that my body was simply fragile. While other kids played sports, I had to stay indoors to avoid injury, spending my childhood immersed in TV and video games.
I have since been diagnosed with Classic Ehlers-Danlos Syndrome (cEDS), Epilepsy, and recently, Hidradenitis Suppurativa (HS).
Living with chronic illness is difficult, primarily because my battles are invisible. To the outside world, I look 'normal,' which often leads to people not believing I am sick or expecting me to do things my body physically can’t handle. People often misunderstand the weight of these conditions; they see the person, but they don't see the disability.
While growing up I was different from all the other kids I got bullied and got called names, so if I knew there were other people like me I would have felt better. I wish someone had come to me and told me it's okay to be different, I would have learn to love and accept myself earlier. You're not alone.
My diagnosis journey was hard and difficult. I got diagnosed because a doctor gave me stitches on a wound then the next day they immediately opened and I went back then the doctor stitched then they open again. Which led him to be shocked and he referred me to a specialist a dermatologist, yah they did the tests and I got diagnosed. But I got diagnosed early on in life. I wish doctors understood the pain we are going through, rather than not believing us.
My mom, and the eds community I created on my social media pages. My mom went with me to doctors appointments was there in hospital, she's my rock.
Growing up, I always felt different from the other kids. I was often bullied and called names, which made me feel incredibly isolated. If I had known back then that there were other people like me, I wouldn't have felt so alone. I wish someone had come to me and told me it's okay to be different; perhaps I would have learned to love and accept myself sooner. If you are reading this and feeling the same way: please know that you are not alone.
My journey to a diagnosis was difficult and unexpected. It actually happened because of an injury. A doctor gave me stitches for a wound, but the very next day, the skin split open again. I went back, he restitched it, and again, it opened. The doctor was shocked. That specific incident led him to refer me to a dermatologist who finally ran the right tests. While I was lucky to be diagnosed relatively early in life, I still wish medical professionals understood the daily pain we go through, rather than dismissing us.
Through it all, my mom has been my rock. She went with me to every appointment and sat by my side in the hospital. Today, I also find hope in the EDS community I've built on social media. Reading supportive comments from people who understand my struggle has helped me feel part of something bigger. It reminds me that we are in this together.
My name is Anna, and I'm 26 years old. I am a queer, racialized, disabled advocate living with axial spondyloarthritis (AS), fibromyalgia, and premenstrual dysphoric disorder (PMDD).
I experienced pain in my lower back, sacroiliac joints, and radiating down to my legs and feet since childhood, but it was easy to ignore until early adolescence and my teen years. Following a strep throat infection at 17, I also began experiencing allodynia, which is nerve pain that can make non-painful stimuli painful, and hyperalgesia, which is more intense/extreme pain responses to painful stimuli. As time passed and all of my symptoms progressed, I began experiencing widespread pain and numbness and tingling in my hands and feet.
In addition to chronic pain, I also experienced increased symptoms of depression, anxiety, brain fog, irritability, impulsivity, pain, fatigue, and suicidality during the luteal phase of my menstrual cycle every month. For basically one to two weeks before my period, I am barely functional, sleeping long hours, making impulsive life decisions, and getting into fights with loved ones. On top of the AS and fibromyalgia, it is an exhausting ordeal to go through every single month, and it made it difficult to go to school or find employment.
After going to several different doctors and having countless tests done, I was diagnosed with AS and Fibromyalgia in 2019 and PMDD in 2022. I was so relieved to finally know what was wrong with me.
Since then, I’ve begun using a cane and walker and sometimes a wheelchair to manage my pain and fatigue levels. I am also using pacing to conserve and plan out my energy. I also make sure to do some stretches every day to stay mobile.
While it was a relief to have a diagnosis, my pain did not subside. The symptoms of AS and fibro are invisible, and I live with chronic pain every day. Most of my time is spent managing my symptoms, and I felt really alone at first, especially as a multiply marginalized person with minimal representation in queer, racialized, and disabled spaces. I volunteer with non-profit organizations, participate in research, and raise awareness on social media about living with disabilities through an intersectional lens, in the hopes that other people going through something similar feel less alone.
I was diagnosed with Rheumatoid Arthritis when I was 18. I knew someone with it at the time but her RA was relatively mild so I wasn’t too worried. But within a few weeks, mine was so bad I couldn’t dress myself and could barely walk. I was started on Prednisone and Methotrexate but this was the early 90s so there were no biologic DMARDs at the time. After I started the steroids, I felt amazing again… for a short time. My joints started flaring and I had to have surgeries to fuse various joints. I was in pain every day but I remember it being pretty manageable as I continued working and going to school and going out with friends.
Thankfully I responded well to Humira when that was finally available. I continued to try to just live my life and do as much as I could. I went to vet school which was a struggle because I needed more surgeries but I made it through. After graduating, I wanted to specialize in acupuncture and physical therapy to help animals with arthritis and neurological diseases. I really can’t imagine how I possibly had the energy to get a second job but I started teaching at a college as well.
I actually did pretty well for a few years but then I started feeling severe fatigue. I continued to work both jobs but it really limited my social life. So I worked and I slept and stopped going out. After a couple more years, I started to have daily GI pain; it could not be diagnosed and didn’t respond to treatment. I changed my hours at work to accommodate my pain and stopped teaching. Things continued to get worse and I started to have strange, unexplained pain everywhere. My neck and back were hurting; my skin hurt when anyone touched me; I was extremely hypervigilant and reactive to sounds; my teeth were so sore I would just hold them and put pressure on them. My occasional migraines became much more frequent and did not respond to medication. In fact, medication seemed to make them worse. I was trying acupuncture, massage, hormone therapy, and any sort of alternative therapy I could find. It all just seemed to make me worse!
I finally stopped working; it was pretty devastating to have gone to school for ten years and then only be able to work in my career for ten years. After a year of lying in bed with worsening pain and other symptoms, my family made me go to the Mayo Clinic in Jacksonville Florida. Their doctors there all said the same thing…..I had to go to their Pain Rehab Clinic. The PRC was a three week, out-patient program that was from 8am-4pm every day. I hadn’t been anywhere by 8am in years but I forced myself to go and this decision literally saved my life.
At PRC I learned that there is a condition called Central Sensitization Syndrome that about 10% of people with chronic pain experience. This is caused by the brain becoming hyper-sensitized to pain signals sent from the body. The hallmark signs are allodynia (things that shouldn’t hurt start to hurt) and hyperalgesia (things that hurt start to hurt way more than they should).
I was upset to hear this but I was also so relieved that this one condition explained every single strange symptom I had been having for years! That so rarely happens in medicine. I learned that these neuroplastic changes in the brain make treatment very tricky and difficult. When I was told they were going to wean me off of my sleep, migraine, pain, and anxiety medications, I was terrified. Even though they weren’t really working, they were the only things I had to try to cope with my pain.
The program consisted of lectures about CSS and how we can learn to tamp down our body’s responses, even though it is an irreversible condition. We did PT, OT, cardio and learned biofeedback breathing to help calm down our CNS. We also learned distraction techniques and how to deal with anxiety and depression and how to moderate our activity to help avoid flare ups.
I jumped into it wholeheartedly because after the first day of lectures, I woke up with minimal GI pain. Within the next couple of days, it was gone completely! I had never had any actual disease process going on in my GI tract…it was literally because the pain signals were overloading my brain so much that my brain was telling me that I had severe GI pain (the allodynia I mentioned before).
I was truly amazed! I honestly couldn’t believe it and had never experienced anything like it before in my life. I was still scared but I was ready to go off all those medications (I stayed on my RA meds of course) and do whatever they wanted me to do.
The hardest part of the treatment was that there is no treatment. The main way to calm down the nervous system is to stop paying attention to it and adding fuel to the fire. We were not allowed to discuss our pain, symptoms or diseases, and our friends and family were not allowed to ask us about our pain symptoms nor could they talk about theirs (Any talk of it at all triggers those neural pathways in the brain). Research shows that chronic pain signals in the brain are amplified the more you think about them and do anything to stimulate them. It’s like when you’re learning anything, the more you do it, the stronger those neural pathways become. The more you think about anything whether it’s good or bad or about pain and other symptoms, all of those neural pathways are more hardwired into your brain and get stronger and stronger with repetition. And with CSS, any medication you take is still stimulating those nerves, which is the reason they don’t actually work anymore and can make you feel worse. I had tried a migraine preventative before I went to the program and it honestly gave me the worst migraines of my life for a month and it was absolutely pure hell. So the things they were saying started to make even more sense to me.
The good news about CSS is that the brain is always changing…it’s neuroplasticity previously made our symptoms worse but it can also be used to make them better.
They have done functional MRIs on people with pain and they can see where the pain centers are in the somatosensory cortex of the brain. Even when the people were not experiencing pain, all they had to do was think about their previous pain and those pain areas lit up in the brain. That’s how powerful our thoughts are.
I think it was harder for other people to stop talking about their conditions and asking me about mine than it was for me to stop. My entire life had revolved around all of my health issues and that’s all I ever talked about with anybody. The reason I became so much worse after I stopped working was because that’s all I concentrated on as I was lying in bed in pain all day. There was nothing else left in my life to distract me.
By the end of the three week PRC program, I felt so much better and in control of my pain and my life. I turned 40 and celebrated by going to England by myself.
While most people with chronic pain don’t have central sensitization syndrome, it still holds true that the more you concentrate on your pain and symptoms, the worse they become. They didn’t tell us in the program to just be positive and think happy thoughts…they told us to stop constantly focusing on and complaining about our symptoms. Distractions are necessary as well as keeping active with all the OT, PT and diaphragmatic breathing.
The key to being able to live with this condition is to calm down the nervous system in any way possible. I have since added in mindfulness meditation, vagus nerve exercises, breathwork, and other various relaxation techniques.
There is no cure and I will always have my pain and other symptoms, but my reaction to them and how I live my life around them has changed dramatically.
I still struggle with my symptoms and I still have really bad days at times, but my quality of life is significantly better. It’s the hardest thing I’ve ever done in my life but it was so incredibly worth it.
