Do you ever feel like your hands and feet are made of lead or when you try to move your body it feels like you are lifting limbs that weight 200 pounds? How about the feeling when you get up after 8 hours of deep sleep and find yourself nodding off at school or work, not from boredom but out of the true need to sleep? What about those night when you keep waking up in the middle of the night in pain, that piercing gnawing pain that never seems to go away? Do you experience aching in your joints that will keep you from falling asleep? Or have a low blood sugar and your body is covered in sweat? How about us girls that wake two or three times to change a pad and the sheet due to a heavy menstral cycle? How many of us have to take naps in the middle of the day to function in the evening?
(Don't get depressed or discouraged, we are going somewhere in this post...)
Personally I struggle with most of these symptoms, at least at one point or another, if not still. I’m the queen of naps. I take a medication at night for my IBS that has heavy duty sleeping side effects. So I sleep like a rock at night. I have to put an obnoxiously loud alarm clock that can be heard all the way downstairs at the other end of my room because my iphone alarm doesn’t wake me up. And yet, after all that deep sleep I still have to take a nap most days from the fatigue of doing everyday life and being busy.
Hopefully at this point in reading you see you aren’t alone? But I’m sure you are frustrated too. WHY?
Because those of us with invisible illness DON’T LOOK SICK. People with type 1 and type 2 diabetes, IBS, Addison's, Hypothyroidism, Hyperthyroidism, Lyme, Endometriosis, PCOS, Lupus, Celiac, Food Sensitivities and some of us with mild Gastroparesis and Crohn's, don’t show any signs of illness. We have all our hair, a lot of times we are average weight, we don’t have IV lines sticking out of us or feeding tubes in our stomach. We do sports, wear make up, go out with friends, go to school and work, so to the average world we look NORMAL.
We may mention being tired when someone asks us, “How are you?” That same person who asks us that once we respond truthfully goes, “oh my gosh I’m so tired too all the time you have no idea…” Well, I’m pretty sure we have an idea of how they feel…. Times 10. Or there are the people who go, “You should stop eating processed sugar,” / “Well go to bed earlier and you won’t feel so tired,” / “Have you tried yoga” / “I have this MAGIC energy pill that will make you feel loads better”/ “Sure you missed three weeks of school because you were SICK , but you look absolutely fine!” / “You don’t need to lose weight sweetie, you look great! Eat this VERY GLUTENUS BAGEL WITH REAL DAIRY CREAM CHEESE!"…..
I’ve almost punched people who have said these things to me. It is true that they have no idea what they are talking about. They haven’t walked a day in our shoes. They can’t. So when you tell someone you are tired or try to explain you invisible medical condition, don’t expect them to help or be sympathetic the way you want them to, they can’t understand.
**Tip for readers who do not suffer from chronic illness: If someone you love or care about who is suffering from chronic illness and they really need to talk about how tired they are or how their condition is getting to them physiologically, just listen. Most of the time they really don't want you to try to fix them, they just want someone to hug them and say i'm sorry and really listen to their breaking heart. They will feel ten times more loved then when you ask them if they've tried supplements or yoga**
My sister has always had health struggles, but not to my degree. I used to really struggle in our relationship because even though she was a registered nurse’s aid, she just didn’t understand how I felt. She’d try to give me advice or talk about how tired she felt from work and life so I didn’t feel so alone. It didn’t help, she tried, but it only made me feel guilty for being as tired as I was and mad because I felt more isolated than ever.
Last year my sister was diagnosed with Lupus, an invisible illness I fortunately do not have, but a combination of my other autoimmune diseases gives me many of the same symptoms as she has, and we also have almost identical food restrictions now. I would never say I’m glad she has Lupus, but MAN she’s such a partner in my illness struggle now. She truly knows how I feel. She never gives me tips on how to feel better, she just listens to all my aches and pains. Then I let her talk about how sick she is feeling and I just listen. Then we take turns telling each other what helps us feel better or exchanging recipes and it’s the best. We encourage each other and remember that flares aren’t forever and we will feel better soon.
My sister is an incredible Lupus warrior, she is a stay at home Mom now with two little boys and a wonderful husband. Everyday care of the kids and housekeeping is exhausting, causes chronic aches, pain and nausea, but she pushes through with a smile on her face. I’m so proud of her.
All of this to say that people who are not chronically ill aren’t going to understand you. They can’t. Some will think you are faking it or aren’t trying hard enough or are super self centered and need people to feel sorry for you. Which royally stinks. This makes our isolation as chronic illness sufferers sting more than ever. Give yourself a break and don’t feel like you need to share your illness with others, it helps sometimes to stay silent and just enjoy everyone for the normal beautiful people they are.
BUT, what is important is to find someone you can talk to, who will just listen, this person knows they will never understand what you are going through because they haven’t been there. They will listen to you, put an arm around you and tell you will get through it and they will stay with you through it all. Finding that person is hard, my parents fill this role for me and now my sister. They know it all. I tell my brothers, my boyfriend and my closest friends as much as I can, keeping some to myself so I don’t appear to be that person in the depths of despair, and they stick by me in my daily illness.
Remember, you will feel “normal” some days. Others days you won’t be able to get out of bed, and that is ok! Celebrate every victory and share it with your closest people. Find a group on invisible illness suffers either through a support group or on a social media platform (instirgam is my favorite) and get to know them, take comfort that you are not the only person going through this daily struggle and take joy in that!
Please feel free to vent or comment via email (autoimmuneadventure@gmail.com) or in the message app here on wix. You can also reach me through my faceboook page or instigram. I am a person who has walked through chronic illness most of my life and can sympathise. Start here, and find others.
You’re amazing and incredible and you’ve got this! Sending you virtual hugs!
