When I was diagnosed with MS in 2008, it wasn’t the family’s first experience of the condition or autoimmunity. It wouldn’t be our last. As I write this, we have three people in our family with MS and one with ulcerative colitis, an inflammatory bowel disease that, like MS, is also autoimmune. As a result, family life in the past ten odd years has been tough, but it has not been without a bright side, which has included the development of a strong support system.
My journey with MS started in 2007. This was not when I first developed symptoms of the condition, but when my cousin was diagnosed with relapsing MS. He had lost all movement down his left side, experienced pins and needles sensations and had optic neuritis in both eyes. At the time, none of us knew much about MS. What followed was some basic learning for me and my immediate family and some in-depth learning for my cousin and my uncle and aunt.
In fact, my family and I drew on our personal contacts and compiled a file of information about the various treatments that were available, in the hope that it would take some of the burden off my cousin. Of course, I didn’t realise then that I too would have to use that file very soon.
Despite having a cousin with the condition, it was still a shock when I was diagnosed a year later, aged 28. I’m convinced however, that my diagnosis happened so quickly because I was already aware of some of the symptoms of MS. So, when I lost the feeling down my left side I (and my parents and uncle!) made sure I saw a doctor for investigation rather than putting it down to “a trapped nerve” and just waiting for it to get better on its own, which is what I’d have done otherwise. It took just ten months for me to be diagnosed, which is relatively quick compared to many people I now know, whose diagnosis took many years.
It was also in 2008 that my younger sister, Anisha, started to experience symptoms that eventually led to her being diagnosed with ulcerative colitis. So, on top of dealing with my MS diagnosis, as a family we were also in “limbo-land” trying to find out what was wrong with my sister. She was in and out of hospitals for investigations and we were helping her to manage some very difficult symptoms that included diarrhoea, stomach cramps, bowel urgency, constipation and increased frequency.
Two years later, it was my identical twin, Manisha, who started to experience weird sensory disturbances in her limbs. By this time, we were very familiar with the diagnostic process and I was able to give her advice about the joys of MRIs and lumbar punctures. Manisha and I have always been very close and we’d always done everything together. We were in the same class at school, had the same friends, went to the same university and studied for the same degree... We even got jobs at the same company after we graduated! We knew that she had an increased risk of developing MS because of me and my cousin having it but we’d always put it to the backs of our minds. But by 2011, that file of information was now being handed to a third person.
Each of us with MS in the family has experienced different combinations of symptoms and we’ve gone down different treatment paths. One thing that has come up time and time again, however, has been the benefit of sharing: worries, experiences and information.
Manisha has often said that being well-informed about the diagnostic pathway and treatment choices definitely helped her, not just in the beginning, but also throughout the years. She was able to build up confidence much earlier because she was already familiar with procedures and terminology, which helped when dealing with healthcare professionals.
The common link has also brought our families closer together. Plus our extended families are much more aware of what MS is because there are three of us who have it. In fact, my cousin has said that one of the positives about him not being the only one with MS in the family is that there are two other people who can also answer questions about the condition!
One of the hardest things to explain to people who know little about MS is that no two people with the condition are the same. In our family that has been very obvious. While in the early days my cousin had to learn how to walk again, but I’ve so far been fully mobile since being diagnosed. While my sister has experienced bowel issues, I’ve experienced bladder issues.
It’s not been without its challenges though. We’re Asian. And having four people in the family with an autoimmune condition has attracted some culturally-sensitive reactions. I’ve been told that it’s karma - my family must’ve done something bad in this or a former life and we’re being punished by God. People have made comments about how it will make it harder for those of us who are unmarried to find a partner because of “having illness in the family.” When I separated from my husband (also Asian), some people assumed he’d left me because I had MS, as in the Asian community having a serious condition and/or disability is often equated to “not being perfect” and not being able to “offer” enough to your partner.
The reality is that we had split up because things just didn’t work out. If anything, I couldn’t have asked for a more supportive partner or family of in-laws when it came to my MS!
It has also been particularly hard for the older generation to see the younger ones in the family experiencing poor health. It’s hard enough when it’s one “child.” It’s even tougher when it’s several. It also prompts extra concerns about the future. When I was diagnosed, it was my sisters who were in my “care plan” for the future. If I needed to give up work or if my needs changed, they were going to be the ones who I would turn to for financial and physical support. Now, that might not be possible, for any of us, depending on how our individual conditions progress. That has meant re-thinking many things – especially considering that my parents who have become my primary caregivers aren’t getting any younger and won’t be around forever.
Having said that, there has always been a feeling that we can share the worries. My parents know they can share concerns with my aunt and uncle, who will potentially have a better understanding of things because they’re going through it themselves. We’ve often shared information about support and services. When my sister started to take injections for her MS, I was on hand to offer the practical hints and tips that only someone who has already had years of experience can give. In fact I remember clearly when Manisha started to experience MS-related fatigue that she said to me, “I now properly understand what fatigue is like – in the past I thought I understood when you described it to me but now I know I didn’t.”
So while having autoimmunity in the family has been challenging, there’s also been a sense of comfort that we’re not alone. We have each other and there’s an understanding that exists, which many people with any condition can only get from outside the family. It doesn’t change things, but it has definitely made things slightly easier. It might be clichéd, but the words of the Sister Sledge song “We Are Family” definitely spring to mind:
“Ev'ryone can see we're together
As we walk on by
(Hey) and we fly just like birds of a feather
I won't tell no lie
All of the people around us they say
Can they be that close
Just let me state for the record
We're giving love in a family dose.”
- Autoimmune disorders https://www.healthline.com/health/autoimmune-disorders
- Risk of developing MS https://www.mstrust.org.uk/a-z/risk-developing-ms
UK/MED/19/0025 February 2019