Today it is an invisible, unexplainable, symptom of my rare disease.

How do I live life? A day at a time, an hour at a time, a minute at a time? I guess this is the easiest way to explain pain to others for me today.

I was finally diagnosed with stiff person syndrome – (SPS). I am, officially one in a million since May 2021, after many years of medical gaslighting.

Looking back, after surviving a very severe septic shock back in February 2024, I admit; yes, most doctors were rude and dismissive but today SPS remains a diagnosis of exclusion still largely based on identified blood markers that I do not have…

How can I completely blame them for what I had to go through, if they didn’t know better. Science does not have all the answers and research is very much needed for SPS and many other rare diseases which often have a common symptom: pain.

I think I developed SPS about 15 years ago. I am so in tune with my body as my first autoimmune disorder was diagnosed at age twelve, type 1 diabetes (T1D). The SPS symptoms were not bothersome at first. I mostly had a stiff back and I was really not flexible. Yes, I had back pain, but I always attributed it to poor posture. Looking back, I was also easily startled… who could have even thought any of the above was the beginning of anything?

Taking care of my T1D seems like a routine step in my day, but that wasn’t always the case. It took me more than 10 years to regulate my HbA1c, and to accept my powerlessness with this chronic illness. At present, I am extremely lucky I don’t have any complications despite the lack of care I put my body through. When first diagnosed I thought having diabetes was the real definition of pain, and it was back then, how could I have known what the future held… and that pain had no limit!

I thought about this for a while and realised that comparison to what could be “tangible” feelings could maybe help others grasp what pain could mean. So, I decided to use health problems, I lived through in life that are more common and therefore ‘concepts’ that can be understood. ‘Concepts’ that are more widely accepted by society because pain is understood by what society conditions us to grasp.

There is a correlation between SPS and Type 1 Diabetes; 50% of SPS patients have type 1 diabetes because of a shared blood marker I do not have. A correlation between two autoimmune diseases, leaving me somewhat perplexed as my diabetes has never been so well controlled, and yet my body is deforming itself due to the intensity of my muscle spasms which cause atrocious pain.

Let me delve into this never-ending debate, the one where we are all told everyone feels pain and yes that is an absolute truth. However, I ask all of you, how do you define pain? I know it is an extremely subjective and controversial concept, it can’t be measured or quantify. Rationally, can you answer my simple question, what is PAIN?

By surprise, I was diagnosed with endometriosis during my search for a diagnosis. With retrospect, I had been suffering since age twelve from periods that lasted seven, up to nine days, with a heavy flow, blood clots, and that made me unable to move from my bed for the first two days. At home, everyone knows, that when I get my period, I can’t do anything. Whatever that feeling, concept, or word is, the suffering on my face and that look cannot be faked piercing through my eyes. And today, when you look carefully it can scare you away so instead most people focus on my beautiful smile.

I never complained much, I thought it was normal and I accepted it until my boyfriend, now husband kept insisting it wasn’t normal. Getting a diagnosis did not help much, I got two laparoscopies, removed several cysts and even had lesions burnt. Guess what? All of it is back… nothing has changed, and the pain hasn’t gone away.

My SPS symptoms gradually became flares that lasted longer, but I had no idea what beast I would eventually be facing. The first quarter of 2021, were some of the scariest months of my life, slowly but surely, I started to really lose the ability to control my body. What I considered pain in 2021 was comparable to my endometriosis pain. A concept, a feeling… people around me can somehow understand and empathise with.

In 2022, post a serious hospitalised Covid infection I experienced my first tin man falls… Broken, fractured bones, torn ligaments, tendons and muscles? Yes! The pain reached a “higher” level, but I could still explain it with examples people could grasp. Breaking or even fracturing a bone is an accepted “painful concept” by society.

In 2022, those were my references when describing my pain.

In 2023, I started feeling more pain and had a harder time finding a comparable or a “tangible” socially accepted concept…

Today, I am torn between laughing or crying. Was that really the pain I had felt all these years?

Living in a deformed body due to displaced bones, constant rigidity and not being able to properly walk, sit, and sleep because of muscle spasms… What is this comparable to, so I can explain it better?

What is pain? I KNOW THE ANSWER, I feel it, yet I know due to lack of research because I have a rare disease, not many will be able to understand how it could be the end of me.

I have a harder question for all of you to answer, what will pain be for me in 2025?

If not for me and the heroes who have stiff person syndrome today, for the younger generation to never have to ask themselves or have this debate with anyone and to receive better treatments and pain management, RESEARCH is very much needed.

Society conditions us to “better understand” and accept someone’s experience and measure of emotional and some physical experiences deemed painful, so much more than someone’s rare and unrelatable physical pain.  

With certainty, I can tell you, with more than a dozen diseases, constant physical pain comes with a heavy cost of emotional pain. In a society where this concept does not exist except for us rare ones, I had to discover it alone so unprepared for it and now live with it.

I ask again, can you TELL ME what 2025 has in store for all of us who suffer from pain caused by a rare disease?

Will it be the year pain kills me because of denied research for rare diseases?

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