When I was 18, I was diagnosed with reactive hypoglycemia, a disease that totally changed my relationship with food. This past year a near-death experience triggered a more serious illness, fibromyalgia. Admittedly, I watched my aunt suffer from a chronic disease growing up and judged her for her antisocial and what seemed like ‘lazy” behavior.
Having the disease myself has taught me what it’s like to live with chronic pain, fatigue, nausea, depression/anxiety, and a host of other symptoms that sometimes make it hard to imagine living, much less make it out of bed. It’s taught me that loved ones may believe they understand or know what I’m going through, but unless they’ve lived with a chronic illness, they can’t appreciate what a tremendous feat it is to get out of bed in the morning or how debilitating my symptoms can be.
By offering a glimpse into my reality, I hope my loved ones and others can understand what sometimes a person with chronic illness wishes they could communicate, but cant.Here are “8 Things Your Loved One With Chronic Illness Needs You to Know.”
I ‘d like you understood the seriousness of my illness and the limits it presents in my life.
As much as I hate it, my life revolves around my illness and flare ups. Pushing myself when I know I’m tired or not feeling well could cause significant damage to my health and keep me in physical and emotional turmoil for weeks. I’ve learned my limits, and when I say “no” to an activity or outing, please know I’m doing it for my health’s sake. Calling me “lazy,” “boring,” or “dramatic” makes me feel even worse.
I feel awful for not being someone you can depend on.
I know I didn’t ask for this illness, but it doesn’t make me feel any less sorry for canceling on you at the last minute or not being able to celebrate life’s exciting moments with you. Just know that I’d rather be there for you versus laying in bed in agony and exhaustion.
I feel totally isolated in my symptoms, and it’s terrifying.
Even if you’re most supportive and understanding friend/family member/ significant other in the world, I’m still going to feel alone and to be honest, even a little (or on my worse days really) bitter. You can only understand so much of what I’m going through. Being alone with so much pain makes me question my sanity and if life’s worth living all the time.
Because others have left, I’m afraid of becoming too dependent on you, or even worse, you abandoning me.
I have had people exit my life or tell me they don’t think they can be with me because of the complications my illness puts into a relationship. I purposefully isolate myself sometimes or won’t let you help me because of this, and it makes me feel even more lonely. I know pushing you away doesn’t help, but that’s how I’ve trained myself to cope with the possibility you might abandon me.
Just because I am trying to stay positive doesn’t mean I feel good that day, it just means I’m trying not to let this disease own my life.
I may be goofing around and acting normal, but in the back of my mind I’m worried about how expending too much energy is going to cause a flare up or how sick I’m going to be when I get home. Just because I can laugh doesn’t mean my nausea, extreme fatigue, or pain has disappeared it just means I feel like letting myself enjoy life. Just because I’m able to do this today also doesn’t mean I can do this tomorrow or next week.
I value our time together, but it drains me.
I have to emotionally and mentally prepare myself to hang out with you. I’m like a battery that has to be charged or it just can’t go. There’s a reason I have to plan social outings so far ahead or cringe at last minute plans that are made or when we deviate from a set schedule of events. Deviating from my med schedule or exerting too much energy can mess me up for weeks.
I hope you know how much I love and appreciate you.
Thank you for checking up on me, understanding why I always bail on you at the last minute and picking me up when I’m down. Thank you for coming over with food or ice cream to watch a movie with me on the couch so that I don’t feel so alone during a flare. I know I can’t be an easy person to love, but I’m so thankful to have you in my life.
I’m still me.
I’m just a version of myself dealing with pain and fatigue on a daily basis. My illness may change how I live my life, but I will not let it own me or stop me from living.
If you or someone you love is dealing with a chronic illness or chronic pain, here is a great resource.
Sources: All images courtesy of Google Images