Diagnosis Limbo
I am not unfamiliar with the time it often takes for diagnosis. I have one that took 26 years and another that took 12 years to get from onset to diagnosis. I just don’t feel like I have another decade of limbo and no treatment in me.
I am waiting on tests. Tests and more tests. Specialists who can only see me twice a year. My primary care tells me to wait to talk to the specialists who order more tests. I talk to a therapist who tells me this is very difficult and I should go and and do more but that’s near impossible when I barely have the energy to be awake.
I have hope that diagnosis can bring treatment and a better life but I don’t know that I have one to three decades in me to keep waiting.
@diligentMoon2758
I'm so sorry that the system is so slow at giving help.
And the support and the answers that you need.
I admire you for always advocating for yourself despite the challenges presented and I'm sincerely sorry you are tired.
Things should be better than this 💚
@diligentMoon2758
Hi there Moon! Welcome to 7 Cups and the Disability Support community. Diagnosis is something that is so elusive. We wait and we wait, and then we have more tests, the tests turn out negative so they do others, or they turn out positive so they do more, and the waiting can be really soul-destroying can't it? Then the change over of consultants as specialists retire and new ones takeover and then they disagree
I approach this and say to myself some questions
1. What would I do with the diagnosis?
2. What would being labelled achieve for me?
3. Would I accept the medication/treatment?
4. What can I do to help myself achieve the best for myself?
5. How can I be kinder to myself whilst waiting?
So some potential answers may be something like this:-
1) The diagnosis is a 'gateway' to give me more benefits
2) People would suddenly have to accept and believe that I am ill
3) Maybe not but I would look at it carefully
4) I can research and investigate things, perhaps improve my diet, or take supplements, or I can write letters or chase appointments, maybe even make a complaint
5) I can join groups (like this one) or take proper breaks and rest, I can watch a good film and take weekends off.
Of course we are all different and only you, know You. So your answers may be totally different, but maybe mine could be a starting point to think about things from a different perspective?
What do you think?
