The Effects of Having Chronic, Invisible Back Pain
I struggle with chronic back pain. I have degenerative disc disease, arthritis, bone spurs, spinal stenosis, sciatica and bulging discs. I also have a spinal cord stimulator.
Having an “invisible” illness has been such an eye-opening experience. From being told, “Walk it off” to “It’s all in your head” or “Lose a few pounds and you’ll feel great” to having people say, “You look fine to me.” I never realized how many people don’t understand pain and the symptoms that go along with it. Yes, I know if I lost some weight, I would feel even a little better. What the people that say that don’t understand is, in order to lose weight, a person needs to be active. When someone struggles with chronic pain, activity is very limited, if at all possible. I have had people tell me to “suck it up” and “walk it off.” Again, if it was that easy, I wouldn’t be sitting here today.
Just because a person’s condition cannot be measured by a blood test doesn’t mean it doesn’t exist. The stigma of having an invisible illness is so frustrating to all of us who struggle. If this article does nothing else, I hope it helps people who have loved ones who struggle understand what we go through, even a little. I also hope it helps other people in pain understand they are not alone, and there are people who truly understand what they are going through, and that this gives them hope and the strength to keep on fighting.
Mentally, going through years of surgeries, physical therapy, injections, tests, imaging and endless medications has broken my spirit. The first surgery I had was a fusion, and for five years, it was successful. It allowed me to go back to the life I had prior to my injury. I was able to enjoy my hobbies, I was able to make plans and actually keep them, I was able to spend time with my loved ones, I was able to do pretty much anything I wanted. I took that too far. I went back to my physically demanding job, pushed myself through pain and wound up doing even more damage. I wasn’t able to say, “I can’t do this, I need help.” For years, I tried to deal with my pain by myself and not let anyone know how bad I was hurting. I thought I was doing a great job. I was wrong.
Anyone who knows me knows my eyes never lie. There are times I look in the mirror and don’t know who is looking back at me. I feel like I’m looking at a stranger. The reality is, it’s me. It’s me after all the struggles, after all the people doubting my pain, doubting the diagnosis, blaming myself for everything possible. Mentally, I feel broken. I am trying to build my mental strength back up, but it’s hard, especially on the days where it takes all I have to get out of bed.
I think the worst thing someone can say to a person who has an invisible illness is “You look fine to me.” Looks can be deceiving. On the outside, I look like a normal 30-something woman. On the inside, I am a mess. Through all of this I’ve learned that we as patients must be our own advocates. We must do our research and ask the tough questions. That’s where the mental strength comes in. It may seem hard to question the people we have trusted to care for us. Some doctors do not like to have their patients question them or their findings. I have been lucky enough to have a pain management doctor who has gone out of his way to help me, keep me informed and fight for my relief. Recently, I went through my imaging reports since my last laminectomy in 2013 and found some structural issues that concern me. I email my doctor every week with my pain journal, and in one of my last emails, I mentioned the structural issues and how they may be affecting me currently.
Emotionally, I feel like a burden most of the time. There is so much I can’t do and I have to ask for help. I was never one to ask for help with anything. I hate that I can’t really enjoy my hobbies at the moment, and that I can rarely commit to plans with loved ones. So many times I have asked myself what I did to deserve this. I know I didn’t do anything. I believe God doesn’t bring us to something we can’t get through. I hate having to depend on other people for things. I hate that there are days it takes all of my energy just to get out of bed. Then regret comes into play and I start to regret not doing things I wanted to do because now I most likely will never be able to.
Friends start to get tired of cancelled plans, loved ones get tired of hearing you are cancelling out again; passions in life go on the back burner, the things you loved to do seem like a distant memory. The mood swings that come along with chronic pain are intense. There are times I snap at people because I am in so much pain I don’t even want to talk. Being out of work is not a “vacation” like some people think. I have nothing but lonely days filled with time to think, and that can be a scary thing at times. Depression and anxiety go hand in hand with chronic illnesses. I have anxiety about the future and about my health. I get depressed because there is so much I want to do, but physically, I can’t.
I belong to some support groups for others like me and my heart breaks for all of us, but especially the ones who don’t have a good support system. I truly believe a strong support system can make or break us. People who love us have to see us in pain and struggling 24/7, and it has to be so frustrating for them, but they also need to understand how frustrating for us this is, all the waiting for answers and treatment, all the appointments and all the medications. Sometimes, our loved ones take their frustrations out on us. It may be a negative comment, it may be a snippy tone to their voice, it may be silence and it may even be anger. Please know that doesn’t do anything but make us feel worse. None of us asked for this to be our lives. Sometimes people just walk away because they can’t handle it anymore. As much as that may hurt, I think them staying for pity would hurt even more.
These are just some of the effects of an invisible illness I have experienced. Learning to try and stay positive has been one of the hardest things I’ve had to do. I know if I let the negativity in, I won’t be able to learn how to cope and handle this. Even on my worst days, I am thankful to be alive and breathing and have people in my life supporting me and loving me.
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Thinkstock photo via RyanKing999.