The Stigma of Self-Treatment but it SAVES LIVES!

I find many people have very negative reactions to my self treatment.

Self-treatment is important for many reasons. For prophylactic use, it keeps me out of the hospital where being exposed to contagious illnesses is riskier to me than a healthy person. There's also the time, cost and effort of getting there. Especially when I'm not doing well and environmental factors are triggering, getting myself to the hospital and back can have a detrimental effect on me. There's also the freedom aspect - having to be someone at a specific time and place can be quite limiting. I was recently provinces away for a funeral - if I had to rely on a medical appointment to get my medication I would not have been able to have arranged that there on such a short notice. When I am considering the things I plan on doing having to have appointments means that I can not easily adjust my prophylactic schedule to best suit my needs.

For PRN use, especially when attacks are occuring self-treatment saves lives. Even if things go directly according to plan for medical professional treatment, there is a delay in getting it due to the time for transport. Depending on where someone is at the time, this can be hours. Things rarely go according to plan, especially for rare conditions. Health care professionals are often unaware of the severity of our situation, so there can be long waits in the emergency room. I have seen someone who was not having an allergic reaction but had a potential allergen exposure be rushed off for treatment while I was having symptoms being made to sit and wait - I should have been triaged as a higher priority. Even if the severity of the situation is recognized there are often further delays with locating medications, deciding that the appropriate treatments should be used - many doctors want to use treatments that are not effective but better known due to common conditions, they are uncomfortable using medications that they have never heard of, they don't even know how to prepare and administer them correctly most of the time. And then if more medication is needed they don't want to provide it as they worry about what an additional dose may do - they are more concerned about the liability of doing something wrong than the lesser liability of doing nothing. Doctors also have no tools to identify attacks. Most attacks have very few signs until things are quite bad. I am better at identifying an attack than a doctor is. I have sought out treatment many times both pre and post diagnosis and proper treatment prior to my diagnosis never happened, and proper treatment post-diagnosis has been rare, even with protocols written out and explanations by me.

So please, don't give me a hard time because I administer something via IV to myself. Don't be unsupportive when I have to diagnose an attack myself. Don't give me a hard time because I require medications - no lifestyle change is going to eliminate that need. Support the fact that treating at home is better than going to the hospital, I have a plan in place for when to go to the hospital AFTER self treatment has occurred. Don't give me a hard time because my medication use varies and the majority of those decisions are made by me.

I don't understand why there is such a push to 'seek medical treatment' when I have a plan by a hematologist - someone who knows much more than 99.9% of health care professionals and the ones that I would be seeing if I do go to the hospital for treatment. You're actually dismissing what the medical advice is by telling me to get more medical advice and if I do go to the hospital without self-treating it is possible that would kill me.