I am sure that this piece will invite some differing opinions and I always encourage honest feedback. I believe it is helpful to see different perspectives on topics. That said what follows is a culmination of my own experiences and observations over the past 10 years, but I never try to speak for others.
I have been a member of several different support groups over the years for the various different health challenges I face, each one is unique of course but there does seem to be a few similarities. Similarities that I wish did not occur as frequently as they did.
I will explain.
Firstly I joined these groups for information about how to best manage and cope with the various illnesses I have. The best source of information seemed to be from fellow sufferers and fighters. Doctors rarely have any practical advice and most often don’t really have a clue to the realities we face. My own specialists tend to discuss these various diseases as though they were no more life changing than a bad flu but it only shows me that they don’t understand anything beyond the diagnosis stage. But that is a topic within itself.. So I joined support groups.
There is any number of groups for the various illnesses, for example MS, RA, IBD, Lupus and so on. Even with subtle variations like women with RA or Mothers with Addison’s or Men with type 1 Diabetes. The list is endless really. However within each group there can be many occasions where members feel discriminated against, bullied and hurt. Regularly someone’s post can become riddled with strange comments and laden with emotion baggage. When I see these situations I can’t help but feel deeply disappointed. I no longer visit these sites that I am members of because I find these incidents quite disappointing. Certainly I don’t go as frequently as I once did. Perhaps others are feeling this way too?
I have often wondered whether such things happen on other sites ie Autism support sites, PreNatal groups, Cancer patient Sites and other medical conditions?
I belong to some other interest groups like Animal lovers groups, Gardening groups etc and I don’t see such arguments and negative comments appearing between the members. It begs the question why? Why is the Autoimmune community so prone to these incidents? What can we do to avoid these situations? Not all groups are like this of course, but it is more common than I think is necessary.
At the basis of this piece is my genuine wish to see the Autoimmune community become a cohesive force for respect, advocacy and understanding. I, personally, work hard to fight the stigma that is connected to people with chronic illnesses. We have been the source of so much discrimination, negativity and derogatory comments that I would dearly love to see this change in my life time. That is my hope anyway. I don’t believe we can achieve this, however, if we can not try and stop the infighting that is happening from fellow sufferers.
This issue is a complex one to unpack because we are all so different with different levels of abilities and different personal circumstances. It is natural that we may not see all things as someone else might if we have different experiences of our diseases. Lack of medical support and social awareness also causes a heavy emotional toll for fellow Autoimmunes who are in the firing line of some of the hardest and some of the most challenging situations possible. But what can be achieved by painful comments and deriding one another?
As a blogger I have put myself (and my story) out there on numerous occasions and always with the honest and sincere attempt to provide information, connection and support for other sufferers but I have also found that some of the worst comments and attacks have not come from the general public but from fellow Autoimmunes! It was heartbreaking and so unnecessary.
Whilst I have the ability to shrug off such people and treat those attacks with the indifference it deserves, I also think about the bigger picture.
I once read the wise words if they don’t know you personally, don’t take things personally... it has become my motto and mantra and that is how I react to people who make comments about me and my illnesses; it’s also good advice for anyone and everyone.
I am convinced that respect has to come from within before we can ask it of others and that is what I would dearly love to see come from the Autoimmune community at large. Put aside our personal differences, our different diet regimes, or our thoughts on each other’s medication choices and become the family that we are meant to be.
We have more things in common as life long chronic illness fighters than we have dividing us.
At the end of the day we all want to find support, to find a place where we can share our experiences, to vent, to ask questions and to give hope to each other and we can do it.
It’s simply a conscious choice on each other’s part.
I want to also mention here that I have had the amazing good fortune to meet some of the most amazing, life changing and wonderful people within these groups. People, who without which, I would not be sitting here writing these pieces. I consider them my family and I am truly honoured to have them in my life.
Chronic illness fighters are some of the bravest and most remarkable people in the world and someday I hope the world will come to know this and appreciate it as much as I do.