To my mihgty freins, my famly neer an far 🌍🌊love ya'll 🌟🎄☃️🎅
Young people with chronic illnesses
Is there a reason it is so much more difficult for me to get the help I need? Just because I am 18 doesn't mean that I don't need me same help!
Doctor With Zero Clue
I believe I have CIPD. Unfortunately, I’m currently dependent on a GP for specialist referrals. I insisted on seeing a Neuromuscular specialist - the guy made an appointment 4 months away(!). I have severe pain 95% of my time - there’s no way I can wait!
2 issues: how do I educate this guy about rare disorders? And is that what he went to med school for?
I’ve read that it’s critical to get early treatment in order to avoid permanent disability. This GP is acting as a human hurdle to treatment. If indeed it is CIPD, isn’t the guy somehow culpable for wasting time, thus contributing to the deterioration of my health?
I have diagnoses of Ehlers-Danlos Syndrome, Fibromyalgia, ME/CFS, Burning Mouth Syndrome, IBS, Hypothyroidism, Severe Degenerative Disc Disease, and unattributed neuropathy, tinnitus and heliotrope rashes.
Any wisdom/thoughts you may have are appreciated. Sending good energy to you.
Everyday has been such a struggle. The mental pain is excruciating. It’s becoming unbearable. My mind is fogged and I have a hard time communicating. I have really no support in any way. I’m tremendously sad and reaching out for some comfort because I don’t know what else to do. I know so many people are struggling too. My heart is with you all and if you are alone, I understand your pain because I feel every bit of it. #Depression #hopeless #Anxiety #Loneliness #AutoimmuneDiseases #NeurologicalDisorder #Loneliness #Pain
a therapist dismissed my migraine
Some day I might find a therapist that I can sit with and talk to and who actually has time for me. But the last one I visited outright denied my experience with migraine illness. Saying that there is no speech impairment with migraine. The tone in her voice made me clam up and all that was on my mind dissipated and I remained silence from that point, struggling to get any words out about what I had in mind. Feeling like there is no point in talking to her if she does not do her homework, does not read through what I've written to her about what I struggle and … a new therapist I can search for, if that truly is what I actually need…