Dear Medical Professionals, Love Spoonies
Dear medical professional,
It's me again. The person who keeps calling, making appointments every week, complaining about everything and who never seems appreciative of the work you do. I know you're tired - with the shortage of other medical professionals, cut backs, patients constantly questioning you and extremely long hours, I can believe that it's an incredibly difficult career to have chosen.
I am truly garetful for absolutely everything you do. If it weren't for you, I'm not entirely sure if I would actually be alive today! Being in medical facilities makes me feel better, I feel surrounded by hope and opportunity that I do not have in my own day to day life. I appreciate the support you provide me and everything that you offer.
When I am disappointed, most times it's towards the system in general, not you personally. You see one day, a brief flash of what it may be like to be disabled and a small explanation of my symptoms allows you to make a decision that will affect my life. I know that you heal and you are there to do good, but a lot of the decisions made for us make us feel invalid or stuck. We are used to being tossed around, pushed aside and have our symptoms be swept under the carpet.
A phrase commonly used by your community is "Wait for the referral , we've done everything we can". We understand the system has limitations, and we get that sometimes there is not much to do other than to be patient. However, acknowledging that those months of waiting for the referral are months of us being in pain, mentally unwell, ill, bedridden or any other symptom that causes issues. You are not asking us to wait to see a medical professional, you are asking us to keep fighting for months dealing with discomfort knowing there is nothing to be done. It is disheartening when you are begging for help and nothing is available immediately.
We also know that medication is amazing and helps us, we truly do. There are some medications that may not work for us personally, but we truly want to get better. When you prescribe a new medication or change dosage, remember that you are sending someone home to usually have more severe symptoms for the next couple of weeks before it gets better. When we say medication is not working, listen to us. We know our bodies better than any medical textbook could have taught you.
How you treat us also interconnects with a lot of sense of self worth in most cases. Being rejected by society and trying to find solace in one of the only communities who might be able to understand, and then to be belittled, mocked or even gaslighted is damaging on multiple fronts. It's not just you being cautious - you actively are causing us to feel invisible and unheard. Some of us do not look like what you may have studied, some of us may look just like you.
Being in this position of power also requires an incredible vocabulary and understanding of different marginalizations. Healing is not about one acute hurt, it is about the entirety of the person. Recognize that how you speak to people is not how you should speak outside of the workplace , just like most individuals. We are not allowed to ask if someone is gay, we are not allowed to ask "What does your boyfriend think about supporting you financially?" when it's not a discussion I am there for, telling someone who is disabled that they "look pretty amazing all things considering" doesn't change that I don't feel good on the inside, and that's the only thing that matters to me.
Please, talk to me with respect. Believe and trust me when I tell you that what I am experiencing is real, even if it may be psycho-somatic. Explain to us what is going on, offer support and words of encouragement. We trust you, and we thank you for continuously fighting this illness with us.
Yesterday was my first official appointment at the pain clinic. Things were okay but mostly just referals, and once again sent home with medication that'll make mental health worse fort the next couple of weeks. However, official diagnoses of Fibromyalgia and a soft connective tissue disorder (Ehler-Danlos). Now, off to wait for all of these referrals!