I subscribe to a health e-zine some of you may know: The Mighty. It tends to focus on areas such as cancer, mental illness, disability, chronic pain, chronic conditions, rare diseases and many more topics. I have several primary categories I read it for.
Today I found an article there that I really felt like I could seriously relate to. As many of you know, I’ve been having to deal with, among other things, an increasing number of diseases, disorders, and conditions that result in chronic pain for the past decade, foremost of which is Trigeminal Neuralgia Type 2 — but there are many others. And just like with other health categories, The Mighty often comes through with a really relevant article, and I thought this one on chronic pain was good today. Entitled “25 ‘Scary’ Side Effects of Chronic Pain We Don’t Talk About,” I can relate to many of these, and I could add many more of my own. I thought about just putting a link to the article here, but thought readers might not be inclined to click on it, so with apologies to The Mighty, in addition to the link, I’m going to re-post the entire (short) article here for you to read. I welcome comments. Thanks.
Paige Wyant authored this.
As those who live with it know, chronic pain can result in so many more symptoms and side effects than “just” pain. Pain conditions can have an impact on just about every part of your life, thus provoking a wide range of emotions.
Living with a chronic, unpredictable condition that is tough to manage can naturally affect your mental and emotional health – and one of the most common side effects pain warriors experience is fear. Many may understandably feel scared and anxious about their health, and worry about what their future might look like.
To help others better understand why those with pain conditions might struggle with feelings of fear, we asked our Mighty community to share a “scary” side effect of chronic pain they experience, and how they cope with it. If the following sound familiar to you, know you’re not alone.
Here’s what our community shared with us:
- “You get so used to being in pain you don’t always have a firm grasp on what’s serious pain anymore. I just got a stress fracture in a new surgical area but I never felt the pain was high enough to be concerned over. Thankfully I’ve learned over the years to err on the side of caution and check with my doctors more often than I’d personally prefer. But every time it turns out to be something serious, it drives home the fact that to me… that serious problem presented as only minor pain.” – Amber R.
- “If I’m this sick and have this many complications at at 29 years old, what will 39…49… 59 look like for me? It’s scary.” – Stephanie B.
- “The toll it can take on my overall mental health. In the middle of a flare, days can blend together and I start feeling pretty depressed. I have to be extra intentional about interacting with others and getting outside of my head.” – Laura F.chronic pain,
- “The fact that no one can see what I’m going through, and that it will never go away. Pain caused by central nervous system disorders can’t be seen, there’s no evidence, so the only person who knows what I’m going through is me. That isolation scares me.” – Amy C.
- “Unknowingly lashing out at loved ones and friends when I’m in a pain flare. I don’t even know I’m doing it at the time, and when all is said and done I’ve usually hurt someone’s feelings. Relationships can suffer because of pain.” – Kathryn M.
- “Collapsing. I hate it. It just happens in a flash and I can’t always feel it coming first. My biggest fear happened recently – my pain surged, my legs collapsed, and I fell flat on my butt in a crowded room. I have never been so embarrassed.” – Katelyn I.
- “There are times when I cannot get out of bed. I can barely move at all, including my jaw to be able to eat or take meds. To cope, I focus on what I need to do to improve my situation. I slowly do gentle stretching exercises starting with my fingers and working to other joints. When I’m able to move enough, I get a protein shake from the mini fridge next to my bed and drink it through a straw, which I keep on my nightstand. Usually by that time I am able to open my jaw enough to take medications. Then I take deep breaths and remind myself the symptoms are temporary while I wait for the meds to kick in.” – Jackie R.
- “Trying to keep my job for the health benefits when I can barely function.” – Ceil B.
- “The financial repercussions. Not being able to work full-time, plus medical expenses and raising three girls on my husband’s salary is scary. I don’t know how people do it. I’m not depressed – I’ve been there – I know what it is, but some days I feel like they’d all be better off without the burden of my health issues. It’s just exhausting, and frustrating, and infuriating… all the time.” – Jen M.S.
- “Forgetting for that split second that you can no longer accomplish a certain natural action of your body, and making it hurt worse. The forgetting of some things is very scary, very. I think our minds need to over compensate in other areas, so we simply become forgetful. For me, very very scary, especially at first. And looking back and realizing things that occurred before I was diagnosed were signals. Scary stuff.” – Sky C.
- “Wondering if this is the way it will be forever or if this is only the tip of the iceberg and it will get worse. Is my 10 today the same as my 10 next month?” – Sarah E.
- “My memory loss. Ever since I was diagnosed with fibromyalgia, my memory has been getting progressively worse. I’ll forget what I’m doing as I’m doing them. I’ll forget what I’m saying mid sentence. It’s scary because I’m 18. It shouldn’t be this way. I cope by writing everything that is important down and making sure that I’ve got notes and lists of everything.” – Abi S.
- “Not being able to be the mom I want to be. Feeling like I’m not enough for my kids physically, emotionally, or financially. I’m not just a single mom but a solo mom to my youngest since his ‘father’ isn’t involved at all. And I’m the primary parent to my oldest.” – Sarah N.M.
- “The doctors’ inability to help me manage it. There are so many laws governing what pain medicines can be given and for how long that it’s almost impossible to get effective pain management. It seems like doctors are now trained to assume everyone (especially those with relatively invisible illnesses like EDS) is seeking pain meds for an addiction. This results in an environment that discourages those who have legitimate pain from asking for the help they need. I’m literally terrified to ask for pain medicine, and usually my husband has to speak up for me or encourage me to seek the help I need.” – LeAnn H.
- “Suicidal thoughts. Before the pain I loved life and the future but now I’m scared of it all driving me into some pretty dark places. Spending time cuddling with the kids and cats helps temporarily.” – Shayla F.W.
- “Symptoms that mimic stroke or heart attack. I have lost feeling on the entire left side of my body, lost my ability to speak, and also had severe chest pain due to the various chronic conditions I have. It is always difficult to decide if I need to go to the emergency room, or if my symptoms are ‘normal.’” – Lisabeth B.D.P.
- “Fear of the unknown for me. My pain changes day to day with EDS and has gotten significantly worse while moving to more and more joints and organs of my body over the last few years alone. I fear not knowing how much pain there will be in 10 or 20 years, when at 30 I’m already not sure what tomorrow’s pain will look like. I have to remind myself every day that God is in control and I only need to take things one day at a time.” – Meg S.
- “When I get a different answer every time I go to the doctors of what is exactly wrong.” – Samantha K.
- “The times when I’m incoherent and on the verge of losing consciousness due to how severe my illnesses are. I purposefully avoid medications that alter my mental state because they cause me such great anxiety, but, when I am in a long bout of severe pain, my mind and body can no longer handle it and so I succumb to being unconscious and it is terrifying. Waking up and not knowing where you are or what happened. How long you were out. I cope by staying away from social situations and staying home so if I do pass out I’m in a safe environment and less embarrassed.” – Caitlin M.
- “Feeling like I’ll never reach my potential because the pain limits me more than I want to admit.” – Jacqueline B.
- “Applying for SSD and getting denied, after giving 30 years in service to this country in the Corps and government agencies. Now a SSA bureaucrat tells me I’m not disabled enough. Financial ruin because I can barely get out of bed in the morning due to the pain. As a single parent, just trying to grocery shop is something I have to mentally gear up for for hours because I dread the pain. I feel deserted by friends, family and my government. Literally don’t know where to turn. That’s my scary…” – Jim R.
- “Making plans and not knowing if you’ll be able to come through. The feeling of letting people down can be as just as bad as the pain itself, knowing others are counting on you… but you just push through and pray you don’t collapse for good.” – Erica F.
- “I never know what I’m able to do. I can be OK one day trying to catch up on all that I’ve slacked on. Then be completely debilitated crying for two weeks.” – Nikki D.
- “Watching the symptoms evolve in our daughter is by far the scariest and hardest thing about this condition for me. I know exactly what’s she’s in for and I can only pray that early diagnosis will give her an easier future.” – Crystal F.
- “The worst part of my Ehlers-Danlos syndrome and all the other things that seem to come with it is guilt. Mostly, I feel guilty of the toll this has brought to my family. The guilt doesn’t seem to end there though. It trickles into every aspect of life itself. Guilt of the day going by with nothing productive done. Guilt that I’m not the mom and wife I used to be. Guilt that my family isn’t nourished with healthy meals because I haven’t been able to cook for so long. Guilt that my children are showing the exact same symptoms of this genetic illness. Guilt that my brother [died by] suicide over this same illness. Guilt that we didn’t have answers sooner. The list could go on and on. Chronic illness never ends, not even if we are tired and are begging for it to go away. The only way I know how to deal with it, is to take one day at a time. Every day I try and remain hopeful and remind myself that I’m not the only one fighting chronic illness and every day I just try and do what I can.” – Melissa D.