We can face a lot of stigma with invisible illnesses. We can be doubted. We can be minimized. But we have certain rights too and the right to enforce them. Our suffering matters. Our well-being matters.
Invisible illnesses… are invisible. Therefore doubted.
- Could be that doctor that doubted the pain you were in, so didn’t treat it
- Could be the ER that doubted your pain
- Could be stigma by a doctor from your mental illness
- Could be because you have mental illness a doctor assumed your pain was ‘all in your head too’
- Could be a family member thought your illness was fake or not that severe as you ‘made it sound’.
- Could be that friend that didn’t think it was that serious and you were just lazy
Could be anyone diminishes your experience. Could be anyone that stigmatizes you due to your illness. Diminishes the suffering you have. Minimizes what you go through.
All of which? Makes us less likely to talk about it. More likely to minimize our suffering to a doctor because they won’t believe us, might think we are complaining, exaggerating, drug seeking or a hypochondriac. More likely to mask our suffering from people because of the stigma we have faced and because you cannot See it, we can fake being well. Creating a lot of isolation for us. Making us more invisible. Avoiding stigma and labels, hiding our suffering and no one ever understanding our true experience.
Our illness is invisible but we are not. We are important. Our treatment is important. Awareness is important. We have the right to be heard, understood, and treated.
We have the right to…
- Find a doctor who listens to what you say. Look for those non-verbal cues that he/she is actually paying attention, not disinterested and not judging you. Watch out for signs of gender, mental illness, and pain stigma. If they don’t seem particularly interested in a treatment plan, then look for another. We should not waste our time on ineffective doctors. We have a chronic condition that needs to be maintained. That requires constant due care and attention by a doctor.
- Avoid friends that are overtly negative about your health. Sick shaming you into believing you are not doing ‘enough’ to treat, or cure, yourself.
- Be explicit with friends about friends about your condition if they doubt you. Tell them what your condition is. What the treatment is. What you do for it. If they still diminish your experience you might want to limit your exposure to that friend. You want healthy, supportive networks of people. Who understand, for example, when you can’t socialize or when you have to cancel plans.
- Educate family members on your condition and treatment. Knowledge is power. Your loved ones and significant other are the ones that should know the most about how well you are coping. Know about your treatments and how effective or non-effective they are. Some family members will never be as supportive as we want, perhaps because they do not even know what to say. It is up to you how much you disclose to certain people. If some people cannot be beneficial for support you don’t need to keep them informed or discuss anything with them.
- To disclose as much or as little about our health to people in our sphere of life as we want. Some people are important to us and we want them in our support network. People that will help us cope by being there for us. And those people we disclose more. But we do not have to validate our illness to people. We have the right to disclose little to people we do not know. Or nothing at all, if we desire.
- Educate ourselves and our doctors if need be. We have the right to learn about our illness. To keep up on research. To learn about new treatments. And we have the right to approach our doctor, politely of course, with information we learn to see if it would help in our care. Sometimes we have to be our own advocates. Sometimes we end up knowing more than our doctors because we have the disease for so long and they only learn a little about it.
- To proper pain management. This is important these days. And will become more and more important. If opiates are on the outs, then something has to replace them… like a damn fine pain management strategy for every single chronic pain patient. And it better be successful as well. We have the right to pain management. We have the right to pain treatment. I just don’t know if that right will be easy to accomplish these days.
Always remember you matter. Your treatment matters. And your well-being matters.