themighty logo

The Frustration of Talking to Loved Ones Who Can't Comprehend Your Invisible Illness

We all know how time slows down for us with our medical and/or emotional illness. Everyone around us is go, go, go and we are constantly in pain, uncomfortable in our skin, and just feeling rough. There are bright patches during the day, or moments I feel lucky to not feel so horrible. When I can actually walk around, have enough dexterity to make something to eat, enough stamina to shower… It feels like a huge accomplishment. Then you hear the dreaded words from someone when you ask for help… “Why can’t you do it yourself?” How do you show your loved ones what you go through when explaining it to them is not enough? (For those of you wondering, hemiplegic migraines cause stroke-like symptoms, difficulty with communication, loss of feeling on one side of your body, with migraine pain that forces you into a hole in your bed hiding from any light like a vampire.) 

For the last few months I’ve had conversations like this with my boyfriend, my mom, my close girlfriends. 

Boyfriend: “Hey hon, how are you feeling?” 

Me: “I’m fine” when I want to say “I’ve been crying.”

Mom: “Are you feeling any better?”

Me: “No mom, I feel like dog poop.” But “I’m fine” comes out instead. 

Girlfriend: “What’s up, buttercup?” 

Me: “Not much.” But in reality the sky is falling on me.

Fine? I’m not fine! What makes us say we’re fine? I’m sick of being sick, my arms and legs feeling weak, my hand won’t grip my fork at dinner but I don’t want anyone knowing. I drop things all the time. My mind races at night with PTSD brain, I’m perpetually exhausted, sometimes I’ve dropped my coffee cup after a rough night of absolutely no sleep. And cleaning it up? Takes a good 15 minutes longer than you can stand. Sometimes my leg gives out on me with no warning so I don’t want to go anywhere no matter what the special trip will be. And you also dread the exhaustion that hits you after you get out of the house. 

There are times I just want to scream to my loved ones… “I’m not fine! I’m scared, I’m exhausted, I’m in pain, I can’t take this anymore!” 

My boyfriend of 2.5 years says he’ll never really understand depression or PTSD because he’s a positive person. I said to him the other day I wish I could give you my physical and emotional pain experience for 10 minutes; you would crumple like a napkin into a ball of fire and ash like a baby man. It hurt me to say that to him.

My elderly grandma of 90 years of life experience recently sent me a beautiful card asking me if I felt better. I am procrastinating writing a letter back because I am coming to the realization that I never may “feel” better. These illnesses have worn me down to nothing-ness. It’s hard to explain to people especially loved ones that you feel like someone took you to a gravel pit, pounded your head into a pulp, dug a grave, dumped rocks and dirt on you and you’re stuck not being able to move half your body. Never mind the numbing, tingling nerve pain when your leg and body work again…. having a stroke like existence (strokes are bad enough to happen once.)  

I keep hoping tomorrow will be better and then bitterly disappointed when tomorrow lets me down. I don’t know why this has happened; the neurologist said it’s genetic. I’m frightened because my kids may have this happen to them. I search the internet for things and ideas that I can do to make it better. I stopped taking all medicines for my issues because I just want to get to a baseline of what my body is now.  

We don’t know what the future holds for us with these invisible illnesses, but I have learned through this that you can take control, you can fight for your rights as a human with disability, you can find peace in the pain. I have made internet friends through groups on Facebook that understand and finding a great therapist helps. If I’m lucky I will come to terms with these diagnoses, but for now, I send encouragement to all reading this to keep communicating to your loved ones your distress. Don’t hide away inside. If you don’t tell them how you’re feeling, how will they ever understand?

We want to hear your story. Become a Mighty contributor here.