The topic of Blog Week about overlap is so incredibly complex that it would make even the most experienced medical specialist run for cover, and they do!
It is not uncommon that autoimmune sufferers can be sent to several different medical specialists because many of us have more than one Autoimmune illness or a systemic illness that will impact on several organs or areas of our bodies.
My personal experience is that I currently have a Neurologist, Rheumatologist, Gastrointestinal specialists, physiotherapist, urologist, Opthamologist, Gynecologist, Orthapedic Surgeon and primary carer. It’s so incredibly complex!
I try very hard to ensure that each specialist will receive all my recent blood work results, latest symptoms, current medicines and that they communicate and consult with each other. However this rarely happens no matter how much I may try. I carry copies of my medical records but the sheer size of paperwork is more than anyone can manage and more than any medical specialist will look at let alone take on board.
Overlapping specialists is very hard to coordinate, especially when you are unwell and struggling with pain and symptoms. There is also a tendency to be labeled as a complex patient and once that happens it will mean that all of the specialists will literally go running for cover. It has made my husband and I want to give up on more than one occasion but often we can not afford such a luxury.
And then there is the issue of overlapping symptoms.
Some autoimmune diseases have very similar symptoms e.g. Fatigue, nerve pain, fevers, inflammation, numbness, nausea and muscle weakness. If you have more than one disease and you experience symptoms it can impossible to know which illness it belongs to and therefore which specialist to consult! There are many times I have been completely unsure of which illness might be flaring or if it is another issue entirely. E.g. Flu, infection, virus etc.
the life of an autoimmune sufferer is incredibly difficult and complex that even people with other chronic diseases may not completely understand and often they don’t.
Yet there is still another overlap to discuss and that is overlapping medications.
Many of the medications used to treat Autoimmune diseases, regardless of which one you may have, are very similar in their function and protocols. They include pain medications, corticosteroids, strong immune suppressants, chemotherapy drugs, ivig, anti depressants, muscle relaxants, NSAIDs, beta blockers and so on.
Many different autoimmune diseases may use many similar treatments and still have mixed outcomes. Nothing works for everyone all the time. Sometimes the side effects can far outweigh the benefits.
In the circumstances where you may be taking one drug for one disease, it can cause a rise in the activity of another disease. I have found myself in this position on many occasions. It can be heartbreaking and terribly frustrating.
Another overlap that I will also mention here, briefly, is if you happen to have several diseases and then join several relevant support groups for help and understanding, whilst each group may be helpful in dealing with a particular aspect of your struggles, very rarely will any one group understand all the issues you may be trying to manage. Thus you are both inside each group and outside it. It can feel terribly isolating. At least it has for me.
At this current time I belong to several different support groups, all with helpful intentions and yet focused on their specific areas of concerns but it is hard when you feel that no one inside each group understands the whole you and the realities of what you may be going through.
Overlap can be an incredibly difficult term to explain and a very unique issue for each different autoimmune sufferer. It is for this reason that I have often questioned whether dividing all autoimmune diseases into over 100 different diseases has been helpful for the autoimmune community at large when many sufferers can experience so many overlapping issues, symptoms and treatments. Sometimes I feel that there may be some real benefits in coordination and focusing together, with an overarching purpose and appreciation of the person as a whole.