A friend of mine is currently supporting their family member through a very difficult health time, which also includes being newly diagnosed with an autoimmune disease. He is doing an amazing job but he is filled with the worries and questions that many good supportive family members have for their loved ones.
I would dearly like to provide all the answers he desperately seeks but there are so many challenges in doing so that I feel as though my help may be proving just as difficult as the disease/diagnosis itself.
Here are some of the hurdles to helping this dear friend.
Firstly, and mostly importantly, is the fact that I am not a doctor and so in any case of someone struggling with symptoms and terrible challenges, although I may identify deeply with the person, I can never assume the role of a doctor. Although I may relate to many of the experiences that someone else is going through ultimately I know that my advice is not the as important as that of a certified doctor.
Secondly, no matter how many autoimmune fighters you will speak to (assuming that you would try) you would discover we all have our own unique variations on our symptoms, our circumstances, our treatments, our results, our disease progression, our attitudes, our supports and our coping. There are no two sufferers who have exactly the same history and life with their autoimmune disease/s. None.
What this means can be very difficult to understand for the casual observer and for sufferers alike as we dearly want to find someone we whom we identify with completely, someone we can learn from and someone that we can share all our struggles with. Over the years I have learned to accept that whilst I may never find someone with the same history, circumstances, journey and diagnosis as me, I am grateful for anyone who can truly empathize with me and understand the struggles we both share.
This, however, isn’t always exactly what the newly diagnosed, or their support network, want to hear. They will often want definitive answers and someone to tell them what to do and how to do it.
Because each sufferer is unique we have to find out early on and for ourselves how to follow our own inner voice and to prioritize what we need and when we need it. Often this can be incredibly overwhelming and conflicting but that is the essence of these diseases in a nutshell. There never seems to be simple answers or easy choices. Ever.
Often we simply do what we have to do and not what we would like to do. This is the daily struggle with Autoimmune diseases.
Like first time parents who are now in charge of a screaming, demanding, challenging and life long commitment, autoimmune sufferers are in for the long haul. Whilst we all start out with the best intentions and the desire to be the poster child for autoimmune disease fighters, it can quickly become evident that it isn’t that easy and the reality can be agonizingly different from the picture in our minds.
Using the same analogy there will be times that you feel overwhelmed and close to giving up but there will also be times when you are proud of your parenting (coping) skills and feel like you have made monumental strides in your progress. Only time will ever tell.
Whilst my friend and his family member (the autoimmune sufferer) are starting out at the beginning I can’t help but feel so deeply for them about what lays ahead. But I also know that there is a great amount that I can’t prepare them for and they will need to find out for themselves.
The hardest part for so many sufferers is that it always comes down to ‘watchful waiting‘ with these diseases. How long will this last? Why is this happening? When will this pain stop? What will happen to my career now? What will happen to my family now? What will happen to my life now? Is this going to last forever? Is this the new me? What medications are going to help me? What is to become of me?… the hardest part of all this is that the answers are always the same in that only time will can ever answer the millions of questions we have.
Diseases like autoimmune illnesses take time from their sufferers and time is always our most precious commodity in life. We have to learn to give over control and time to these diseases and learn to live inside the unknown and never knowing what tomorrow will give.
Perhaps the only things I can really offer my friend and his family member at this difficult time is my patience, my empathy and the reassurance that, no matter whatever happens in the future, they can make it through with lots of love, endless commitment to each other and always believing in themselves.