When You Find Out the Chronic Pain You Feel Isn’t ‘All in Your Head’

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You’ve experienced extreme pain for most of your teenage years and what few adult years you’ve lived so far. When you talk to the doctors, their response is, “Oh, that’s normal,” and you listen to them. I mean, they did go to medical school for years, so they obviously know everything medical. Right?

That was my first big mistake of my adult life. I figured my pain tolerance was just a lot less than the average woman, so this was just my normal. If you ask anyone with a chronic pain disease, they will almost always tell you the same thing: “I wish I could go back in time and tell my younger self to push the doctors more.”

When you live almost every day in pain and you haven’t been diagnosed with anything, it’s a struggle. How do you tell your employer, “I’m in pain for no reason and have to call out multiple times a month, but please continue my employment with your company”?

woman lying on couch
Christa lying on her couch.

This “in-between” stage of trying to figure out what is wrong with you is torture — all the tests and procedures and blood work. You feel like a scientific experiment. You know as soon as you find out what’s wrong with you that the relief of an actual answer will be like the entire world lifted off your shoulders. It’s not all in your head; you’re not over-exaggerating everything you’ve been feeling. But what happens after that moment of relief?

It’s been a little over a month since my confirmed diagnosis. My doctors had suspected endometriosis for almost three years by the time of my surgery, so I was prepared for that — but I wasn’t prepared for the PAD (pelvic adhesive disease, thanks to the inflammation of the endometrial adhesions), uterine fibroids and uterine polyps.

At my post-op surgery, hearing the doctors confirm everything and tell me they were able to remove everything was amazing! I was feeling great and was validated by the news. But as I’m driving home from work, my new theme song for life, “Fight Song” by Rachel Platten, comes on. I’ve listened to it so many times since my surgery; I really fell in love with it. But this time, I’m listening to the lyrics, and as the words “take back my life song” play, I just lose it. Warm tears roll down my face. That amazing feeling I’ve had since my surgery is long gone, only to be replaced with dread and fear.

I’m going to have this pain for the rest of my life. It’s not like the flu, where you go to your doctors and they give you medicine and voila, you’re healed! I go in for surgery to have everything removed, and in about six months’ time it’s just going to grow back until I can’t handle the pain anymore again. Then, repeat. I’m not going to miraculously heal. Surgery doesn’t mean that I’m cured. It means that I’ll have more good days than bad for a change until it comes back.

As a 24-year-old woman with an invisible chronic pain disease, this thought terrifies me. My amazing and patient husband has helped me out more than a husband should have to. The days that I’m stuck in bed, or the even luckier days when I barely make it to the couch, he brings me what I need without a single complaint. He takes on the housework, cooks meals and takes care of our dogs. I feel like such a burden in life. Like a failure. Not only has this disease taken away my life, but possibly my fertility. How is a woman supposed to care for her family when she can barely care for herself?

This disease is not only something I have to live with for the rest of my life, but something that my husband will have to handle as well. He’s become very aware of my non-verbal signs that I’m in pain, or very close to a flare, even when I say I’m fine. He’s gone above and beyond our vows of “in sickness and in health.” I’m going to warrior on with this life as I believe this is the life God chose for me. But as Rachel puts it, “I’ve still got a lot of fight left in me.”

Lead photo source: Thinkstock Images

The Mighty is asking the following: Give advice to someone who has just been diagnosed with your illness. What do you wish someone had told you? 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.

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To the Loved Ones of a Person Living With Chronic Pain

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I’m not sure if chronic pain is isolating in and of itself, but it’s often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you’re living in a state that is so entirely foreign and inconceivable to most people — and that is what makes it alienating.

Good portions of my day are usually spent being guilt-tripped by friends that I haven’t seen them, haven’t FaceTimed them, never call, never text, etc. Before I always felt the need to apologize and explain myself, but most of the time now, I am so sick of constantly having to explain myself. People don’t realize the fear — the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn’t capable mentally and physically of contributing to conversations, and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight I am slowly losing, and compared to what I used to look like, I generally feel like I let myself go. My hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you’re doing, it can also be a pain if you’re being asked 15 times in a row. I already do this with doctors almost every day.

Some people have taken it personally that I haven’t tried to “rekindle” relationships with them. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren’t just “checking in” but calling me every day. To me, the people who loved me at my darkest are the ones I prioritize.

Here are several things I believe need to be known:

In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself, and for some people, it’s just too damn sad, so at the risk of making it uncomfortable, let’s keep it about you. Or just send me funny things. I always appreciate it. No one understands how boring this gets sometimes. I generally try to “shield” people from how bad my pain really is.

If I cancel plans last minute, it’s never because I don’t feel like coming. I am in my house, doctor’s offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are good about this and some obviously aren’t. I’ve just decided I can’t feel bad about making decisions that may affect other people. I’m responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgment calls…whether it upsets other people or not.

I try to explain to people that my days sometimes feel like a sh*tty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10 percent left and all of sudden you’re at 2 percent. Sometimes this becomes an anxious social situation. Situations where I am out with friends and I haven’t driven — I have no control. If I need to go home but can’t, I panic. I avoid these situations as much as possible.

Having a “good day” doesn’t mean I’m better; it just means I’m having a good day. And even if I’m smiling and looking like I’m having a great time, there’s a good chance I’m screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, it has nothing to do with you.

When I say that I can’t be cured or that I’ll never be healthy, I’m not trying to be negative. My life is not CrossFit. I have boundaries and limitations. This is my reality and I’ve come to terms with it. I’ve accepted it. I hope others do, too.

Don’t be offended if I forget things you’ve told me. When my pain is bad, my memory can be extremely foggy and my short-term recall is really bad. Most people refer to it as “fibro fog,” and it’s a real thing. Google it. 

I don’t want to be known as “the girl with pain.” I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I’m in a “normal” setting.

Just because you see me posting online doesn’t mean I’m feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself.

I always try to be in a good, positive mood, but sometimes when you’re running on no sleep with lots of pain, it compromises your mood. Sometimes I just don’t want to do anything with anyone. Or talk to anyone. I need my alone time.

Small, thoughtful gestures mean the world to me. Actions always speak louder than words.

Dealing with chronic pain drains me every day. People who have known me forever have known me as an extrovert, but that is changing.

Even if I’m having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don’t want to listen to yours. I never purposefully try and make it a competition.

I still struggle with figuring out what I need from my friends and family sometimes. I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don’t want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged.

It’s when people are uncomfortable with me that I become uncomfortable with myself. But I am comfortable with myself, and I own who I am.

Follow this journey on Slightly Distressed Damsel.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. 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.

Lead photo source: Thinkstock Images

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An Apology Letter to My Body With Chronic Pain

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Dear body,

I’m sorry for wishing you were different and calling you flawed. Living with chronic pain for 12 years taught me to question a lot and dislike much about you. In the chronic pain world, we’re encouraged to constantly ask ourselves, “Are you hurt or does it just hurt?” We live in a world where “find a distraction” is our first line of defense because “find a reason” and “find a solution” aren’t always possible. The absence of an explanation from you about why it hurts makes me crave reason and logic that much more, which directly conflicts with my experience of pain for which there is little semblance of such amenities.

I’m sure many other bodies with chronic pain can relate to the psychological scrutiny they experienced when they first sought treatment for why they hurt. Doctors and family members alike were determined to tell me that you’re making it up – it’s all in your head. It’s not in your head! The only things that are in your head are the decisions you make and the ways you live your life each day in spite of and because of your chronic pain.

Body, I spend a significant amount of energy and effort fighting for functionality and normalcy, which both come with their own unique consequences. For example, the cultural notions of what a “perfect body” looks like has made it easy for me to find reasons to dislike you. Mainstream media tells me ableism and thinness are indicative of “ideal” bodies; for you, that’s not realistic. It’s hard for you to attain what the world depicts as the “perfect body” because often there’s no explanation or quick fix, and in some capacity your physicality is limited. I’m sorry if there were some days I pushed you too hard. When you live with chronic pain, you’re taught to simultaneously be hyperaware of yourself, question yourself and ignore your pain whenever possible.

The dismissive nature of ignoring your hurting and ignoring you can be minimizing to a body plagued by chronic pain. It perpetuates a narrative that suggests I can just think your pain away and that it’s psychological, maybe even not real. I think this makes others perceive your experience as less severe. Living with an invisible illness means if you choose to tell people about your condition, you constantly have to convince people you’re struggling. Likewise, for you, that same narrative makes good pain days much more deceptive. I sometimes find myself questioning your experiences — asking “Is it really that bad?” Sometimes I even feel like those other, bad days are someone else’s life, a dream or something you conjured up. That’s what they want me to think! The problem is, if I’m questioning you, why am I surprised when others do, too? What accommodations, narratives and misconceptions are others supporting or creating about chronic pain that keep us questioning you?

Here’s an idea, body: rather than criticizing you, let’s (together) accept your reality, reclaim your strength and demonstrate all the ways you can be excellent — all the ways we can be excellent.

This story was originally published on RSDSA.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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 Share Your Story page for more about our submission guidelines. 

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My Strategy for Coping With Chronic Pain on a Daily Basis

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One of my friends who fights chronic pain asked me how I cope with pain and illness on a daily basis, so I thought I should share in hope that it will help somebody else out.

I’ve built up my own techniques for dealing chronic illness over the years. When I’m at my worst (a lifeless, crying mess with pain being a nine to 10) I always close my eyes, just breathe and visualize myself on stage performing a lyrical dance with raw emotion and just dancing my heart out. It’s a massive distraction. I could do it for hours and hours, and even though it takes more energy out of me and I become a little weaker and more brain-fogged, I’ve found that it’s really helped me cope and not to focus or dwell on the pain.

Also, I visualize myself snorkeling in the underground river in Mexico. It keeps me calm and relaxed when things get scary (like when paramedics thought I was having a stroke), during months of paralysis or when I think bad thoughts about being so severely ill forever. Some people might find this bizarre, but I’ve found it to be the best strategy for coping with constant agony. When the pain is center stage, it helps me stay determined and focused on my dreams, recovery and goals keeps the pain out of the spotlight for a little while.

If you fight a chronic illness, maybe you could try these techniques, but using something personal, close to you and what you really love. This could be you visualizing yourself doing a hobby or even walking down the street soaking up the surroundings, from the comfort of your own home.

When things like pain get really bad, I believe we have to tell ourselves that nothing bad is going to happen (before I was diagnosed, I was scared, confused and thought I was dying — and I wasn’t anywhere near as bad as I am now). And although it’s not “normal,” it’s become our normal. We’ve got no choice but to accept it and fight it in order to move on. Accepting it doesn’t mean you’re being negative and going to be like this for the rest of your life — it’s just part if the process you need to do, otherwise you’ll be running in circles for a long time pretending it’s not real when it’s the realest part of your life.

You’ve got to stay true to yourself.

A collage of photos of Chloe

Follow this journey on The Chronicals of Chronic Illness.

Editor’s note: This is based on one person’s opinion and experience and shouldn’t be taken as medical advice.

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What I Sometimes Wish People Knew About Chronic Pain

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It’s been years since chronic pain ruled my life. Doctor’s appointments, prescription refills, medical tests, procedures and fear about what was next all used to demand my full attention. But now I’m sometimes amazed to find I have made it through nearly an entire day without my chronic pain crossing my mind. It’s an achievement I would never have believed possible four years ago.

But even with the progress I have made, I sometimes wish people knew what a feat it was for me to even show up for work on some days. That they would understand what an accomplishment it was for me to get through an entire workday, then a workweek, even when I felt like taking those days just five minutes at a time.

See, I made a deal with myself years ago not to be the person who would always talk about pain. It had invaded my life and integrated itself with me, but it didn’t have to become my life. Making that realization made a huge difference in the quality of life I led and helped me change my mindset and accomplish things I never thought would be possible for me again.

This being said, there were times when I just wanted people to understand. There’s an old joke I once heard about a woman in labor. Her husband is offered the chance to be connected to a new machine that transfers a percentage of the pain of child labor to the father of the baby. He manages 10 percent, then 25 percent and then 50 percent without any pain. The doctors crank the machine up to 100 percent, and both man and wife go through a completely pain-free delivery. After the baby is born, the doctors are astonished at his tolerance because most men never make it over 20 percent. When they arrive home with their newborn, the mailman is dead on the front step.

Sometimes, I kind of wish this pain machine were real. For the doctors who don’t believe. For the people who don’t understand. For those who judge because they can’t see. And often, it isn’t something you could ever see. Instead, habits and behaviors are born from it.

For me, even without my pain being what it used to, I can still see the signs when I look for them. How I can’t sit still for more than a minute or two at most without shifting. Constant stretching. The stash of emergency medication I never leave home without just in case one of my killer migraines show up. The additional stash of OTC meds and pain patches I keep on hand to help pain from taking control. How I go to sleep every night with special pillows for neck, back and knee support, as well as a heating pad for my lower back and an ice pack on my neck and shoulders.

As you know, no such pain transfer machine exists, nor will it likely ever exist. We have our families, trusted doctors and friends who can see it, and that is usually enough. If you are struggling with pain, take pride in the accomplishments you make every day. No one else may realize what landmark you may have achieved — but you know. That is what matters.

Follow this journey on Alyce’s blog.

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16 ‘Gifts’ a Person With Chronic Pain Really Wants for Christmas

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This morning, on his way out the door to Oxford Circus, my husband asked me the loaded question: “What do you want for Christmas?”

I thought about it for about 0.005 seconds and replied, “No more pain.” I’ve suffered chronic pain for over three years now after a surgery that went awry. No one can tell me if it will ever go away; no one has a cure. My pain suddenly disappearing would be nothing short of a Christmas miracle. But it’s unrealistic. So I decided to expand my Christmas wish list.

I have all the stuff I need. No jewelry or gadgets under the tree for this girl. I’ve also got a loving husband who understands me and supports me and two amazing daughters who will one day conquer the world. All I need are things that money can’t buy. But here they are anyway.

1. No more pain.

2. OK, something more realistic: less pain. Especially in the mornings when I’m trying to get the kids off to school. Or at 3 a.m. when I’m trying to sleep.

3. How about just a short break from pain? Like a holiday? Just a short hiatus (preferably in the Caribbean) so I can remember what it’s like to feel normal.

4. No more drugs.

5. Or, more realistically, better drugs. Drugs that don’t make me sleepy, nauseated, grumpy or have weird bursts of energy at inopportune times (like at 3 a.m., when I’m trying to sleep). Drugs that don’t make the pharmacist treat me like an addict.

6. Pharmacists who don’t treat me like an addict. I have enough going on, thank you very much, to be given the third degree by someone who doesn’t even know one tiny part of my story. I am not the drugs I take. I am a patient, just like anyone else. Just because you can’t see my pain doesn’t make it any less real.

7. Energy.

8. More realistically (maybe?), a clone of me. The science is up to par in our grandly technological world, right? So let’s make a clone of me. One who doesn’t have pain and can toss her kids in the air, play soccer with them, cook amazing, healthy meals for breakfast, lunch and dinner and doesn’t tire. One who has the energy to talk through her day with her husband at 9 p.m. instead of flopping into bed and watching Netflix. And can we make clone-Jenny’s hair a little less frizzy, please?

9. Friends who understand what I’m going through. When I say “I’m in pain,” I don’t want a recap of the latest study about yoga reducing inflammation or that you have a great naturopath. I want to hear, “That sucks. That just really f*cking sucks, my friend.” I want a friend who will watch TV with me when I can’t bring myself to leave the couch. I want a friend who will understand when I cancel for the umpteenth time because I don’t feel well. I want that friend to stop by with chocolate chip cookies and tell me that everything will be OK. Even when everything is far, far from OK.

10. Chocolate chip cookies. Because they’re freaking delicious.

11. A village, i.e. “it takes a village.” I live far away from my village — across the ocean, to be exact — and I haven’t found a new one yet. It’s really hard to create a village when you live thousands of miles away from your nearest and dearest. I want someone I can call when I’m feeling like sh*t and need some help collecting the kids from school. Someone who can pop by, play a game with them and let me have a nap. Babysitters are great, but I miss my village. My people. My mom and dad, aunts and uncles, brother and cousins. The people who know you inside and out, backwards and forwards. I miss my best friend bringing me chocolate chip cookies and telling me everything will be OK. Even when it won’t.

12. Chocolate chip cookies. Because you can never have enough.

13. A doctor who can cure me.

14. Except we live in the real world in 2015. So how about a doctor who doesn’t take one look at my file and say, “We’ve got to get you off these drugs”? Assume I’ve tried everything else (I have). The drugs get me through the day without curling into a ball of pain on the bathroom floor (and even with them it sometimes happens). Assume I need them — because I do — and don’t pressure me to get off them. Because without painkillers, there would be pain. So. Much. Pain. If I could re-wire my brain, I would. But I can’t. That’s where you come in, Doc. Help me through this. But don’t assume, like that cranky pharmacist, that I’m a drug-seeker. Believe me, it’s the last thing I want to be taking. But here we are, Doc. You and me. Let’s figure this out together, with my input and yours, and figure out a plan that’s workable and doesn’t make anything worse.

15. A do-over. Let’s wipe the slate clean, go back in time and take back the one surgery that made this all happen. Let’s borrow Dr. Who’s TARDIS. That’s not too much to ask, is it, Santa? David Tennant lives around the corner; I bet he has an extra we can borrow.

16. My final wish is for no one to ever, ever have to deal with chronic illness. Someday we’ll get there with science, with medicine, with miracles, with blood and tears and sweat. With whatever it takes.

But until then, I wish each and every one of you the gift of being seen. Seen for what you are, for who you are and for all of your extraordinary strength. I see you. And I think you are doing a kick-ass job.

Follow this journey at Rainy Day Gal.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. 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.

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