Abby is in her twenties, living with MCAS, POTS & Ehlers Danlos.
Living with chronic illnesses Ehlers Danlos, POTS, MCAS, I have always struggled with getting a diagnosis. This means a lifetime of constantly having to ‘prove’ to doctors just how poorly I am. Doctors so often say ‘you’re looking well’ or when I return for a follow-up appointment, in just the same awful state, ‘well, you’re looking better’.
Am I? I think. I don’t feel it! It makes me want to cry as I feel like they are invalidating how I feel inside and I panic that they aren’t going to look as hard or go out of their way to help me because I don’t look as ‘ill’ as some of their other patients. I think young women often face this challenge, as I’ve heard it again and again from other young female patients.
When you are ill, you aren’t desperate to LOOK ill because you want to BE ill. You are desperate for someone to SEE how ill you are because you ARE ill and need answers to get better!
I am sorry that you’re going through this. I have the same health conditions as you. I really struggled to be taken seriously and to get any kind of diagnosis when I was younger and I was constantly dismissed . Now that I am older and in my 40’s ( it took until I was 40 to finally be diagnosed with multiple conditions) I am finding that once again my age and being female has become a barrier once again to receiving help / treatment. Assumptions are made, as they were when I was younger and I am not being heard. I hope that you receive the support that you need asap.