Whenever someone is experiencing an issue with their health, the most common course of action is to get a diagnosis. A medical diagnosis can provide answers, direction and allow for treatment to begin. But what happens when no one can find an answer?
What if you are living with many physical symptoms that no doctor can explain? Or who simply ignores your symptoms and concerns and says " It's nothing" and doesnt give you the support you need? This experience is not only difficult due to the obvious physical pains, but it can also be incredibly isolating.
When a person does not have a diagnosis, it can be very hard to handle the uncertainty of what might be wrong. In some cases, doctors may suggest that the symptoms being experienced are all in your head or just part of “normal life”. This often leads to people feeling as though they are being ignored or dismissed. 100% the case in my situation. Over time, this lack of understanding from others can lead to feelings of isolation and loneliness.
I am 6 months away from two years from the start of when all of my symptoms started ranging from tremors, myoclonic jerks, headaches, numbness, dizziness, nausea, muscle spasms, weakness, stiffness, spotty vision/sensitive eyes, pain, fatigue, cognitive difficulties, sensitivity to cold, electric like shocks through body, weird sensations (like water was spilt on me or hot spot flashes on my legs), spatial awareness difficulties, difficulties finding the right word/dysphonia (loss of volume in speech), issues with swallowing (dysphagia)...this doesn't even include everything.
Another challenge that I face and people like me face; when living without a diagnosis is the inability to connect with others who may have similar experiences. If someone has been diagnosed with cancer or another disease, there are many support groups available for them to turn to for help and advice on how best to deal with their situation. However, without any concrete information about what is going on in their body, it is much more difficult for people without diagnoses to find someone who understands what they are going through or how it affects them physically and emotionally. I have joined a few groups on social media but without a diagnosis I feel like a cheat.
Being unable to get a diagnosis can lead to feelings of depression and more stress or anxiety due to the uncertainty surrounding your health issues. You may feel overwhelmed by the unknown or frustrated with the lack of progress in finding a diagnosis. I give myself a day saying "this sucks" then get up and move on. The longer it takes for a diagnosis, the closer the "this sucks" days get. Staying positive. Doing things I love and being with people I love makes the difficult days easier.
From experience, living without a diagnosis can be an incredibly lonely experience. I do not wish this on anyone and hope you do not need to wait for the answer but if you are going through something like this it is normal to feel this way. Remember that you're not alone, there are many people that care about you and want nothing more than for you to find relief from your symptoms. Continue to take care of yourself through self-care activities, talking to family and friends until a diagnosis finally comes along.