When Having Invisible Symptoms is Useful
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| Copyright: C King |
On this World MS Day, social media will undoubtedly be flooded by posts about invisible symptoms. Rightly so, as it's important for non-MSers to understand these symptoms, and perhaps for others in chronic illness communities to see the relative similarities and differences in our conditions. I'd like to do something different, however. I would like to look at when having symptoms that are invisible, may be advantageous.
When we're not ready
Sometimes, we just aren't ready to show our hand. This is true of lots of situations. As a member of various online forums, I see people who have just started dating someone and are unsure about telling them for fear of sacrificing a potential relationship. Likewise for those who are newly-diagnosed and want to deal with the diagnosis, before telling others.But this isn't just about diagnosis. When I meet someone in person for the first time, be it friend, colleague or client, I certainly don't lead with the MS, mostly because I want them to get to know me before all of the explanation I'll likely have to give about this one area of my life. How many times have we told someone about our condition and heard the emotional outpouring of "I'm sorry." I'm not going to lie. Sometimes, it feels freeing that they don't know. At least, not yet. Those living with a chronic condition know that it's a fine line between people knowing about your condition, and it being all that they remember when they think of you.
When we're not resilient
This often goes hand in hand with the above. We aren't always resilient every day; certainly not in discussing such a private topic. A less than positive reaction to our diagnosis can bring on a negative reaction in ourselves, and this can be detrimental to our resilience.I remember having told a friend about my MS in the early days of diagnosis. I had been very matter-of-fact in telling my story. But when she called to see how I was doing a few days later, I was abrupt and when we ended the call, I cried. Just because we're resilient one minute, doesn't mean we feel this all of the time. Shit happens, and sometimes it happens unexpectedly, and often it doesn't have to happen at all for us to worry or feel guilty, or have any manner of emotions that lead to us not feeling adequately buoyant on any given day. She didn't do anything wrong; if anything she was an amazing friend, but that day I just didn't want to go 'there.'
When we're unsure
When I was diagnosed, I did what I normally do when I face a challenge, and attacked it head on by researching the life out of the subject. But when it came to telling others, I realised that there were holes in the story. Not in the research itself, having used reputable sites, but that I was not identifying with my findings. I was detached, not yet relating it to what I was going through. In fact, as with much in MS, even after 14 years of living with this condition, I haven't yet experienced all of the symptoms listed and it may be that I never will, therefore it's a very difficult condition to relate to. So I found myself still unsure about how to credibly express invisible symptoms in a way in which people would adequately understand. This meant that fundamentally, particularly in the early days, I wasn't sure how to navigate questions from others.In the same vein, occasionally as a Career Coach, I come across clients who are resolute that they will not discuss their health condition with their employer. As their Coach, no matter how I may personally feel about a topic, I have to respect this, be impartial and support their journey. I have to make an effort to understand their view, and I do, as I myself have had inner conflicts about sharing the MS in the workplace. I understand the dilemma of having a stable condition with no noticeable symptoms, with the potential for all this to change. I understand the dilemma of telling an employer when there are no symptoms or they are almost wholly invisible. Why wouldn't my client keep their condition to themselves?
Speaking as 'friend' Carla and not 'Coach' Carla for a moment: if there are invisible symptoms that are troubling you, it's worth finding ways through with your medical team and employer. This is when it really isn't going to be useful for you to struggle on.
Coming back to my first point, I still believe it is important to educate others where knowledge is lacking and to challenge fear. Sometimes, ignorance is seen as preferable, but I find this is because of an unfounded or blanket fear that people may have previously experienced and are now attaching to our circumstances. On this basis, I think it's helpful for us to be open with those around us. After all, what is the purpose of international days if not to better understand and to get under the surface of what is really going on with a person.
Wouldn't it be great if we looked at another individual and really saw them?
#MyInvisibleMS #MS #MultipleSclerosis #MSLife #ChronicIllness #SpoonieLife
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