Everyone that lives with chronic illness eventually has a moment where they experience isolating and painful loneliness. It hits you when you realize that because of your illness you’ve been forgotten. Somehow despite your best efforts you’ve become invisible. The pain of it hits you like a ton of bricks as you realize that you are no longer like everyone else. You live in a different world, a world of pain, a world of a broken medical system, a world of exhaustion, and illness management.
Despite all you’ve gone through you really tried to stay around. You made an effort to not disappear every time you had a flare, your pain level spiked, or your medication was taken away. You even tried to keep helping others despite the fact that you were hurting, but when that moment hits you realize your efforts weren’t good enough. You tried so hard to pretend you were well so that you could fit in and be with “normal” people, but you failed.
When others move on
You can’t do everything they do, so you don’t belong. There is a barrier between you and them, a barrier that is very difficult to cross. Despite all the work you do to try to cross it, in the end only they have the power to reach across the barrier and pull you to the other side. Other people are moving on with their lives. They’re managing their careers, creating families, developing new friendships. And you, your life depends on how bad the weather is that day, how long it takes you to recover from standing in line at the DMV, whether or not the doctor screwed up your prescription, or on how many people with addiction are abusing the medication you depend on. You don’t know or understand what is going on in your body, but you wish that somehow your friends did. Because maybe that would take away the pain.
Your life is
separate
different
isolated
lonely
Sometimes you feel ashamed. Like it’s all your fault that you’ve found yourself alone. If only you could have done better or fought harder. If only you hadn’t pushed people away to avoid judgment and hurt. If only you could be better, happier, stronger, or more selfless. You must have become too withdrawn, too prideful for others to want to be around you.
When you have a chronic illness you are strong every time you interact with someone who doesn't understand you Click To Tweet
Sometimes you feel guilt. Guilt for not being able to keep up with everyone else. Why can’t you just do the things you are expected to do? Why do you always fall short? Maybe it’s your fault that you can’t seem to do enough or keep up. Maybe this is something you asked for. You were probably not trying hard enough, you didn’t have a good enough attitude, you might be a bad person because this doesn’t happen to “good people,” and really it’s just your fault for not having enough faith.
You exist in a space of blame. You’re blamed for your illness, you’re blamed for not overcoming your illness, you’re blamed for not ignoring your illness, you’re blamed for not being positive about your illness, you’re blamed for not organizing your illness, you’re blamed for not making a doctor help you, and you’re blamed for handling your illness the wrong way. Everywhere you look there is blame and it all sits on you. The weight of blame doesn’t go away.
You are strong
Despite all this, and despite what others think of you, you’re a survivor. You’ve been beaten and bruised and you haven’t given up yet. You keep going against insurmountable odds. Every time you are forced to face a new battle you somehow find the courage. Even if no one else sees your strength, you are strong every time you:
- interact with people who don’t understand you
- feel compassion for others, despite all the pain you carry yourself
- carry on despite your illness
- get out of bed ready to continue to fight
Even if no one else sees it, you are a chronic illness warrior.
the problem is, I am just so fatigued that even getting out of bed is more than I can do on many days. I know the longer I stay in bed, the worse I potentially make it for my body. But the exhaustion is overwhelming, and I don’t even function like a normal person any more. Alone, I can’t even get close friends to email me back any more. They will email once every few months, as if they feel obliged to do it, but when I write back with questions, they never reply anymore. I feel like I am living a non-existence and am finding it very difficult as of late. I have dealt with “fifty shades” of chronic pain and fatigue for over 10 years, and just lately find that more than ever it is weighing me down!
I’m so sorry to hear your struggle Debi, I wish that no one had to suffer like this. It’s so hard for friends to understand what we’re going through. The online chronic illness community is what has saved me, they’re the only people who get it.
? Yes, Thanks. Bad day!
One of the worst things about having a chronic illness is the isolation. It’s very difficult to maintain friendships. I find it is easier to keep in touch with friends and distant family is by texting. I’m more likely to get a response by text than email.
On a different subject manner, the one thing I splurge on is having a maid service twice a month. It is so worth paying to have a clean house rather than cleaning myself and being in pain for a couple days or more. Its worth looking into, it may not be as expensive as you think.
Maid service is the dream! I had them come when we sold out house and when we bought a new one and it was amazing. Really I’m just stubborn, and I refuse to have someone do it on a regular basis for me. I’m sure I’ll give in eventually though.
My friend Dawn Cady is a pain coach, she has been suffering herself from a lot of pain and managed to get off all the painkillers and other medication. Without the doctors. Now she helps other sufferers to eliminate pain and other symptoms, naturally and to reclaim their lives back again. Just like she did for me.
If you are suffering of pain, please check her out and contact her to see if she can help you to.
Just google Dawn Cady Pain Transformation Coach.
I wish you all a pain-free, happy long life