Autoimmune Etiquette 

Years ago I managed to upset a fellow autoimmune sufferer by suggesting that perhaps [they] may be higher functioning than I was. I use this term to describe someone who might currently be more mobile and more able to do somethings e.g. Walking, eating and running than someone else. [They] felt deeply insulted by my term and felt I was attacking their struggle and their illness. I was deeply surprised that this had occurred, although I have seen it happen quite regularly in groups. When it comes to my advocacy and feelings towards my fellow sufferers than I think that if someone really knew me or my character than they would have no doubt of my intentions. I still believe that as I write and advocate now. 

I will never please everyone and I will never assume I speak for everyone either. 

We are all so different that we can never assume that any one person is the gold standard for any particular autoimmune illness. We can vary so dramatically in our abilities and flares and treatments while still sharing some similar diagnosis. I personally believe no one should feel that it is a competition, yet many do. 

Why? 

Perhaps because these diseases are considered invisible illnesses by many that sufferers feel that it is a real battle to get people to believe their suffering or struggle and sometimes they feel any suggestion that they are not as affected as someone else is an attack on their credibility. This may be true from the able bodied world, but I don’t think many fellow sufferers doubt each other or consider these illnesses a competition. I truly believe that anyone who has suffered any long term pain rarely looks down on another for not suffering enough!- I really hope they wouldn’t anyway. It’s not something that you would wish upon anyone. 

However the reality is that many sufferers vary dramatically in their level of ability or disability. It’s just the reality of it. Nobody knows why someone will be more impaired than another or experience more flares than another. It is a medical mystery. 

Someone with several illnesses may find themselves severely limited in their abilities to live independently and function, and these things become important when it comes to planning the level of care and support you will require day to day. If you happen to be a sufferer who can still drive, walk, dress or work, albeit with pain, than this is different to someone who is living bedridden and requires a carer in order to do the very basics e.g. Showering, toileting and eating. 

No one wants to be that disabled and no one should wish it on a fellow sufferer, as it is not a competition. Ever. 

I have witnessed how quickly an illness can change and become more systemic or debilitating in my own circumstances and with other sufferers. These diseases can be terrifying if we try to imagine what could happen in the future. Sometimes it’s so cruel that we don’t know what will happen. So we try to make the most of anything we can do for as long as we can do it. Cultivating good etiquette amongst sufferers where we celebrate someone’s abilities and opportunities while at the same time being able to recognize the difficulties and struggles of another is essential. 

As I write this I am aware that there are higher functioning sufferers than me and that there are far more disabled than me, and with less support. It is all person specific. But it’s not a competition either. Although I am fortunate to have a husband that happily carries me, feeds me and assists me in many ways without a moments thought, I dearly wish I didn’t have to rely on him. Deeply wish!

I would encourage the autoimmune community to not feel threatened or competitive with each other. I recall Theodore Roosevelt, a president known for his exuberant personality, range of interests and achievements, is quoted as saying: Comparison is the thief of joy. I believe this whole heartedly. 

It isn’t easy when we see someone who may be able to do things that we are no longer able to do. I have experienced these feelings on several occasions myself. I think it is human. But although I wish I could do something I can’t do anymore, I wouldn’t wish impairment or loss of ability on anyone. Not for one second. 

We are all different but I feel like the common bond we share in having these painful and frustrating diseases is enough to lay the foundations of respect and empathy and I think that how we treat each other can be a blueprint for how we want the outside world to treat us. Respect is essential. 

Gentle hugs, 

Trish 

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