Chronic illnesses and disorders are a tricky thing, but those that are invisible are even more complicated to understand. They do not come with the standard physical clues or immediate concern and respect that other conditions do. Further, they do not possess an easy measurement to test or validate the sufferer’s claims. There is no easy way to show how well someone is coping with a condition like depression or chronic fatigue syndrome. As an invisible health issue is often something that can only be gauged by the one experiencing it, there is difficulty in sharing it with someone and having them respond in a constructive way.
People have told me before that it is hard to care about me, much less love me. I wish I could blame this on a fixable personality quirk or a strange approach to relationships, but it is often related to my health condition. I have been suffering from the symptoms of fibromyalgia since I was fourteen and was given the weighty burden of official diagnosis by a rheumatology specialist that my university clinic referred me to at twenty years old.
Fibromyalgia is a medical condition characterized by a plethora of undesirable physical symptoms, most notably widespread body pain and a mental fuzziness termed “fibro fog.” It comes in waves of varying severity and manifests in different ways for different people. My experience has been unrefreshing sleep and pain that radiates all over my body, culminating across my hips and up my back. Fibromylagia is, more generally, a chronic pain disorder that has no cure and is invisible to the eye.
While you will never be able to understand exactly what someone with a condition like this is truly experiencing, there are some ways to better facilitate communication and support. These are in no way comprehensive, but they are important and apply to many different medical concerns that are both visible and invisible.
1. Don’t call our bodies “broken.”
I am fully aware that I have used this word on more than one occasion to describe my own body, but I still believe that it is incredibly rude and uncalled for from anyone else. This word has negative connotations and condemns the experience of suffering from a medical condition to a part of the vocabulary that defines them. This also assumes that they were once whole and something happened that broke them. Medical issues often do not have concrete causes or explanations for surfacing. It is unfair to call someone with depression “broken” as if their condition has rendered a once complete item unusable. Having a health condition does not make a person any less valuable than another. We may be suffering from illnesses with varying levels of severity, but that does not make us broken.
2. Be supportive, within reason.
There is nothing wrong with admitting that you do not understand what someone is going through. There is also nothing wrong with explaining that you do not have time to drive someone to a medical appointment or take care of them on a bad day. One of the biggest non-ailment specific things that plague those who have a health condition is guilt.
Trust me when I say that asking for help, or even confiding in others, is a difficult task. I hate burdening those around me with my problems and often try to hide them to avoid making them feel bad or obligated to help me out. It is so much easier to tell someone I am tired or hungover than to explain my reality.
Do offer to help if someone you care about has the courage to tell you what they are going through. However, remember to be honest and only do what you are willing to. It is incredibly humiliating to be in a position of vulnerability and to have someone express resentment for something they offered to do. If you cannot or really do not want to keep me company on a bad day or support me in a waiting room, tell me that you are unable to instead of doing it anyway and making the experience more uncomfortable for me.
3. Work to understand the symptoms and limitations.
One of the best ways to facilitate communication about a disorder is to understand it. While symptoms and experiences differ for everyone, there are commonalities that span most sufferers. Look up the diagnosis and the possible symptoms. This provides a working template for understanding and respecting what someone is going through.
Additionally, it serves as a good reminder to take a step back when someone tells you that they do not feel up to something on any given day. If chronic fatigue is a symptom of their condition, it is unfair to push them too hard when they tell you they need to rest. If they suffer from physical pain, be considerate when they cannot participate in athletic endeavors. It all boils down to learning to respect the limitations that come with any condition. There will be days for going out and having fun, but also ones that demand staying in bed with a good book or Netflix.
4. Never imply that the condition is all in our heads.
This is probably the most damaging thing I have personally experienced as it both belittles a person’s suffering and creates a sense of guilt for bringing it up. Invisible conditions are real things and incredibly potent to those who experience them. Pain, whether physical or emotional, is never something to write off as unimportant. You cannot verify an exact cause in the same way you can with a broken bone, but it is still there. Respect that it exists and that it is real. Do not assume that it is nothing or that it is something that can be ignored on command.
5. Don’t be a dick about it.
I would love to be healthy and not have to live with a condition like fibromyalgia. Having a medical problem is not fun and not something I am particularly proud to speak about. If I ask for help or some small accommodation, it is a huge cost to my own self worth. It is not easy asking for a seat on a crowded bus of students and being glared at while I explain how much it hurts to stand that day and hearing the judging whispers under their breaths as they call me unsavory names.
If you find out that someone is suffering from a mental illness, do not try and make assumptions about why or where it came from. Unprofessional psychoanalysis is both obnoxious and uncalled for. There are many reasons why something could surface and most of the known reasons are incredibly personal and triggering for the sufferer. Additionally, there is often no tangible cause and therefore it is incredibly unfair to say someone has anxiety because of “daddy issues” or some other contrived explanation.
When someone expresses fear or anxiety about an upcoming appointment or procedure, do your best to be supportive. It is okay to placate with phrases like “I’m sure it will be fine” or “Let’s watch a movie and try to take your mind off it.” It is not okay to belittle those feelings by calling them overreactions or ridiculous. When you spend most of your day pretending you are fine to the public, sometimes you need to express your fear to someone who cares for you. If someone does this with you, respect their fears and offer support in whichever way you can, be it holding their hand in a waiting room, providing distractions, or promising them tea when they are done.
6. Be positive.
No one, no matter how awesome they are, will be able to love away the symptoms of a medical condition. With this in mind, I want to stress the importance of positivity and support in a general sense. There are medications and specialists to help with the medical portion as best they can and that is not something we expect loved ones to do.
What someone with a chronic condition often needs is a safe place to exist where they can feel comfortable and know that someone cares. Do not say that you understand, but instead offer hugs or warm tea as small symbols of support. Offer your presence as a distraction and source of comfort for the individual.
Just remember through it all, compassion and respect go a long way to maintain a good relationship. One of the worst parts about chronic conditions is isolation. That is where a supportive friend really makes a difference.