When People Assume You’ve ‘Gotten Used to’ Your Chronic Illness
There is so much about dealing with a chronic illness that people don’t know or understand. This is why education is so important. Unfortunately, those of us who are advocates and speak up on behalf of those who can’t or aren’t comfortable doing so are often looked upon in a negative manner. No one wants to hear “complainers” or understand the realities of chronic illness. Yet, if no one shares the struggle or is willing to be open, how can the world learn? We can’t suffer in silence.
Advances in changing the differently-abled world have come through the advocates who fight so hard for themselves and others to create greater understanding and connections with “normal” society. But people don’t want to hear it. “Quit your bellyaching,” “It can’t be that bad,” “You just want an excuse to lay around all day and watch TV,” “You are just seeking attention!”
One of the most challenging aspects of a chronic, lingering, incurable and progressive illness is that after years, people assume it becomes easier to manage. The support we initially received often fades away. People quit calling and inviting us out and get tired of being flexible with us because we often have to cancel or don’t last long. They assume the emotional pain of the initial diagnosis has healed and the physical pain actually gets easier as we “get used to” the treatments, medications, hospital stays and scary medical procedures.
We never get used to it. Never. It never becomes easier. We develop coping skills to get through it, but the pain of the first IV, blood test, boredom of the first hospital stay, fear of the unknown future and recurring bad news is just as hard the 1,000th time as the first time, if not harder, as the body often becomes more and more intolerant.
I cringe more now at each needle stick than I did 22 years ago as my veins have hardened. I have permanent bruises and scar tissue to dig through, making lab draws not just one fairly easy stick, but a series of many attempts that fail. Often they hit a nerve while trying to dig up a difficult vein, resulting in days or weeks of pain and numbness up that arm. Sometimes they have to go into my foot, neck, arterial vein or femoral vein to get even one tube of blood.
I have run out of things to do while stuck at home in bed. I long to have a more substantial social life and be more active, but my energy continues to deplete more and more. My pain increases with more procedures and medications. Side effects increase as more medications are added that interact with each other. Doctors say, “Let’s start this one to counteract the side effects of that one.” It becomes more complicated. Eventually it becomes overwhelming as more and more effects accumulate and the long-term impact takes control emotionally, mentally and physically. Over time, my body has developed a tolerance to so many medications, limiting my treatment options even more. The longer I am sick, the less chance there is of a full recovery as my body weakens and forms new problems from years of medications and treatments. It’s like being initially diagnosed over and over and over…
Please don’t assume that pain or suffering ever goes away or even eases up. Often, it gets even harder as we realize how much we’ve lost and will never get back, and the options to find a new normal become limited or nonexistent. Family and friends are traumatized and supportive during the initial months or years after a diagnosis, but with time, that is often lost. People assume we’ve learned how to handle things and that it’s not as difficult to hear bad news for the 50th time or endure a painful procedure for the 100th time as it was for the first. We learn to dread testing. We are nervous with any new symptom. We develop a fear of going to doctors because we are afraid that new pain is yet one more organ shutting down. And our bodies have been fighting so long, they don’t have the strength to fight one more thing.
The need for love and support, someone to call, visit, and take time out of busy schedule for a quick visit with us is as big as ever and more meaningful than ever, because we realize how much we have lost and how little we can give back. No matter how much we want to, we just can’t overcome the physical and “just do it.” Not like we used to. It’s taken a toll on us. We struggle just as much, if not more, yet the coping resources have depleted, and offerings from loved ones to sit and hold our hands, just listen, visit for a movie night or play a game dwindle until they end almost altogether. We are easily forgotten about or left out of plans because it’s conveniently easy to leave us out, with the excuse of the “inconvenience” of letting us in. Or, because people automatically assume we will turn them down. Please offer and never stop offering. The offers let us know we are still remembered and loved, even if we can only accept a small percentage of the time.
Please think of someone suffering from grief, loss or pain of any kind. No matter how long it has been, don’t assume the scars have healed and life will ever be easier or normal again. Time does not heal all wounds or end the pain.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.