Why I'm Speaking Out About My Chronic Pain

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How do you learn best? My learning style is very hands on. I benefit from taking notes, as the physicality of writing down information makes it easier for me to store. I also appreciate, and can better recall, demonstrations over presentations. But that’s just learning on the surface. How I truly evolve as a person is by engaging in difficult conversations – asking questions that might seem trivial to some, listening to others’ opinions which may oppose my own and seeking out tough-to-swallow truths in the hopes of discovering new depths.

 

Weaving chronic illness into everyday conversation is a lot like speaking about grief. Each day feels a little bit like the last, so the dialogue can get stale. But that doesn’t mean it isn’t real or any less important. No one really knows the right thing to say – so they often choose to avoid the subject matter entirely. I am guilty of this, too. It can be tough to ask people going through challenges about them directly. Sometimes, I think I am scared of the answers. Other times, I am not sure if I will know what to say in return. What if I am not comforting enough? What if I am just another reminder of their hurt or loss? What if they are at their breaking point and my question pushes them ever so slightly over the edge?

But here’s the danger in that logic. If we do not talk about what makes us sad, what demons we face or what battles keep us up at night – we are only encouraging others to hide them, too. And this is not OK. This creates a chain reaction of fear which is deeply rooted in something so simple, yet so damaging: mystery. We fear what we do not understand. And we each have a responsibility to discuss whatever haunts us, with searing honesty. We can’t expect other people to ask the tough questions if we aren’t willing to bridge the subject matter in the first place.

I used to hide my disability and struggles with chronic pain from the world. When I met people for the first time, I would speak about my love of headbands or my deep affinity for sending snail mail. I would think, speaking about how much pain I am in is not what they want to hear because it’s a downer. So instead, conversation would flit in and out of superficial subjects like the weather or how good Sriracha is on every food group. But this pattern of avoidance did not help anyone, you see. Frank conversations about what people go through need to happen. This is the only way we can move towards acceptance and better representation of that which makes us different. Plus, chronic pain is my reality, and is the ocean in which so many other people are drowning, so it doesn’t hold more or less weight than a full-time job or a couple’s plan to get pregnant. It is my truth. It must be spoken.

In an effort to heed my own advice, I have been openly speaking about my pain with strangers. Don’t get me wrong, it doesn’t come up in the initial introduction or in line at the grocery store, but I don’t hide it as much anymore. This exchange is fundamental to learning more about how other people orbit the sun. After all, if we don’t explore how others live, how will we ever evolve?

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Thinkstock photo via OGri.

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10 Things Only People With Chronic Pain Will Understand

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This piece was written by Fortesa Latifi, a Thought Catalog contributor.

1. There’s levels to this sh*t.

Every person with chronic pain is different and experiences their pain in different ways, but they all have levels they move through as the pain becomes worse. Maybe you pop a few ibuprofen when the pain first rears its ugly head. Next, a heating pad or an ice pack. When it still doesn’t subside, you might try to take a nap or at least lay in a dark room with the blinds closed. After that, it might be time for a painkiller. And of course, sometimes you end up in the emergency room.

2. Sometimes it’s easier to lie.

You’re having an especially painful day but you recently started a new job. Instead of sending an email to your boss detailing your diagnosis and issues, you might lie and say you have a cold. It’s easier for your boss to understand that and you don’t have to recite thousands of pages of medical records. Win-win.

3. You feel guilty almost all the time.

You know it’s not your fault you’re in pain but for some reason, that doesn’t necessarily do anything to assuage your guilt at missing important events or doing badly on a test that you know you would’ve nailed otherwise. You may feel guilty for slowing other people down, for constantly having to duck out of plans at the last minute and for being irritable and touchy when the pain is bad. You know you didn’t choose this but you still may feel guilty as hell when it affects other people’s lives.

4. You don’t remember what “normal” feels like.

Pain is part of your everyday life. Drugs, appointments and new therapies are commonplace. You may not remember what it feels like not to be in pain.

5. You vacillate wildly between hope and acceptance.

Some days maybe you’re sure your new doctor is onto something and you’re going to be pain-free one day. Other days, you might be trying to accept that this is how your life is always going to be. When you have hope, you’re terrified to lose it. When you’ve reached acceptance, you’re ignoring anything that could give you hope again. The cycle continues.

6. You’re basically an expert on your disease/diagnosis.

You know everything there is to know about your situation. Knowledge is power, right? Or maybe it’s just because you desperately Google your diagnosis every other week. Whichever.

7. Random people are always trying to “help” you.

Your mom’s friend’s daughter tries to convince you that going gluten-free is the answer to all your problems. A doctor wants to know if you ate too many processed meats as a child. A college friend says she knows the exact mix of vitamins that will “literally cure you.” And you just sit there, nodding and smiling, because it’s more polite than telling them to shut up.

8. Being in constant pain can affect your emotions.

Chronic pain is hell on your emotions. You’re up and down depending on the drugs your doctor gave you that week. You can’t stop screaming at your boyfriend over petty stuff because the pain is so bad that your fuse is literally one centimeter long. You might feel hopeless because the last round of treatment did nothing. Chronic pain isn’t only physical – your emotional health can be affected, too.

9. Sometimes, you just don’t want to talk about it.

You really appreciate your loved ones checking in on you and asking how you’re feeling but sometimes, talking about it is the last thing you want to do. You just want to pretend it doesn’t exist for a little while.

10. People with chronic pain are badasses.

Anything you accomplish should be celebrated because you did it while your body was fighting against you. The simplest things can feel monumentally difficult when you’re in chronic pain, but you’re still fighting. Look at you. You’re a badass, even on the days when it’s just you, closed blinds and your ice pack.

This story is brought to you by Thought Catalog and Quote Catalog.

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Thinkstock photo via cirano83

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How Chronic Illness Has Taught Me There's More Than One Kind of Pain

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I sometimes wonder what people without chronic pain and illnesses think living with a chronic condition is like. I’ve had some people say, “Is it just your abdominal pain?” and my response is usually, “There’s a long list, but mainly the abdominal pain.”

That long list is actually what makes living with a chronic condition so tough. Can you imagine reading out your list of aches and pains to every person who asked about it? Under the skin of chronic conditions lives a massive group of other problems. I want people to know that when someone says they have chronic pain, they’re probably dealing with a lot more than what they tell you.

Here’s a bit about me. I struggle with undiagnosed chronic abdominal pain. That’s the big one – the main condition. However, on the side, I have terrible hypermobility that leaves my joints frail and easy to dislocate; often they ache and overusing my joints can cause a lot of pain. Then there’s the scoliosis. Usually scoliosis doesn’t cause pain but in my case it does, and it can become very difficult and debilitating to deal with. I can’t sit, lie down, stand or do anything without it hurting. There’s no way to get comfy. I then have chronic fatigue and migraines. Then my seizures, another undiagnosed problem that usually leaves me injured after big ones. Next is my asthma that triggers more easily since becoming unwell. Usually an inhaler would last months, now it’s only weeks before needing a new one. I then combat mental health issues such as depression and anxiety.

woman with wires attached to her forehead

However, when someone asks me what I struggle with, my answer is chronic abdominal pain. Isn’t that so much shorter and quicker?

I rely on the support and help from family, friends and those within the chronic pain community, because I know they all understand that when I say “I’m in pain,” it could be any one of those things causing it, and they accept that when I complain about a particular part of my body being in pain that I haven’t complained about in a while, it’s real, and I’ll need to try treating the symptoms in different ways than my abdominal pain. They won’t say, “Oh, you’ve never had that problem before.”

Sometimes I use my wheelchair because my abdominal pain is too much for me to walk. Sometimes I use it because my knee joints are flaring up. Sometimes I use it because everything is flaring up and I still need to get outside to do things.

When someone has chronic pain, I always make the assumption there’s more than one type of pain they experience, and should they say something other than the main source of chronic pain is hurting, I won’t judge, I won’t get confused, I won’t even question them. Instead I’ll ask, “How can I help?” or “Is there anything I can get for you?”

 

I know it’s difficult, but sometimes when the pain is high and we’re exhausted and drained we don’t need questions asked about our health. We need to know it’s OK for us to just vent, complain and moan out loud about how much everything is hurting. About how it’s unfair we have to struggle through this, that there’s no cure and no answers to our questions.

I’m curious to know if anyone struggles with just one kind of pain, or if you have a long list of different things that cause pain. What’s the worst? What’s the easiest?

The most we can do is stick up for each other and comfort each other. While some of us are having good days, some of us are having bad days. We need to be there for one another. We already have so much to deal with – that’s why we’re warriors, fighters! We are so strong, we go through so much, we deal with pain that some people will never experience, yet we do it on a daily basis. We not only deal with physical pain, but mental pain that has been brought on by our chronic conditions. It’s made us lose jobs, family members, friends and even lost confidence in ourselves. What was once an easy visit to the doctor is now daunting due to the worry of being judged or called a “drug-abuser” or a “faker.”

But we’re not alone. None of us are. We wear our scars, our stoma bags, our IVs, our feeding tubes, our vog masks, our medicine boxes proudly; we show them off, we wear them with pride. It’s our shield to defend us and our sword to fight the condition with.

woman with wires attached to her forehead

Don’t let anyone tell you different. Don’t let anyone take away your courage and strength.

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22 signs you grew up with chronic pain

22 Signs You Grew Up With Chronic Pain

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As kids, we were just coming into contact with the world and beginning to learn about the way things work – including our bodies. However, if you grew up with a body that was constantly tired or in pain, you might not have recognized at such an early age that these symptoms were unusual. When I was in middle school, I thought it was totally normal to sleep through an entire weekend or have unbearable knee pain that lasted for days after running half a mile in gym class. Sometimes it can take years – decades, even – before we start to think that maybe there’s something going on beyond the typical “growing pains.”

Whether you’ve been officially diagnosed or simply understand the ways your body differs from that of the average, healthy person, looking back on your childhood might make you think, “Hey, that was happening because…!” We asked our community to share some of the “signs” that they grew up with chronic pain, which they now recognize in retrospect. Perhaps some of these “signs” will remind you of moments from your own childhood.

Here’s what the community told us:

1. “I had terrible ‘growing pains.’ I would cry all night because my knees and hips hurt so bad. My mom would take me to doctors but they would just give me calcium pills. As I grew, more joints started hurting too.”

2. “I remember my parents would throw me in ice baths from mystery high fevers. The doctors and hospitals never knew what was wrong with me. It wasn’t until few years ago we found out I happened to be passing multiple kidney stones which can cause infections.”

3. “As a kid I didn’t want to run around and play outside. My very first memories were sitting around drawing, playing video games or playing with Barbies. And it happened very early, at 5 or 6 or 7. If I did run around, I’d get winded, my joints would hurt, my stomach would hurt, my eyesight would go black. But I had no idea any of that was unusual.”

4. “I often had no appetite and was underweight.”

5. “Before I got my diagnosis, I thought it was normal for knees to dislocate when walking or jumping up and down… now I know that isn’t that normal!”

6. “I slept so much when I was younger! Like more than a child should. Also the sun used to make me feel very weak and sick. Now that I’m diagnosed it all makes sense.”

7. “My mom told me I would nonstop cry. And then I slowly stopped because I had grown accustomed to being in pain constantly. I thought others were weird if they didn’t have the same pain as me.”

8. “We went to Disney World when I was 8. I was incredibly excited, but every day, after half a day in the park, I remember having to take constant breaks, complaining of foot pain, leg pain, back pain, fatigue, belly pain, headache, etc. By mid-week, I have a vivid memory of sitting on the ground in the middle of one of the parks and sobbing, telling my parents I just couldn’t go a minute further. I think this was the first time any of us realized how much my pain was affecting me, and how much different my childhood pain and fatigue experience was than that of ‘typical’ children.”

 

9. “For me it was never being able to sit without back support. Even in kindergarten I’d see my classmates just sit ‘tailor-style’ in the middle of the room and I’d need to be sitting against the wall. I always wondered what was wrong with me that I couldn’t do it.”

10. “Going through puberty I always felt miserable. I had horrible periods that caused excruciating pain. I would miss school often because of it. I talked to my mom about it and because she dealt with horrible periods too she would tell me, ‘It just runs in the family, your body is getting used to it.’ Almost 10 years later I learned I have endometriosis.”

11. “Never being able to make friends because all your energy was going into trying to understand enough to pass tests.”

12. “I would always run out of breath faster than everyone else at recess and would be super tired from being up through the the night with ‘growing pains.’ So I would spend most of the time just watching other kids play.”

13. “I was always getting sick, whether it was an upset stomach or an actual cold.”

14. “I constantly had to wear a knee brace during the day and while playing any sports. I had horrible pain in my knee all the time and we never figured out why until I was later diagnosed with Ehlers-Danlos syndrome.”

15. “My pain was exaggerated. A simple injury ended up being way worse. After skating on a Friday night I would wake up crying in the middle of the night and couldn’t move my hips.”

16. “I would have trouble running (breathing, heart racing) and was told it was from being out of shape, even though I would insist I wasn’t really tired.”

17. “My fibromyalgia symptoms started when I was about 12. None of the many doctors I saw while I was a teenager had any answers for me, so I gave up eventually and developed coping techniques on my own. Now, in my mid-30s, I still expect doctors not to be able to help me, regardless of what the problem is.”

18. “Gym class was torture. The exercises and sports wiped me out within minutes. I also got horrible stomachaches after every time I ate. I was the kid in nurse’s office after almost every lunch hour.”

19. “I talk about my pain and my fatigue now. I talk about it with anyone who asks or listens. I wasn’t allowed to talk about it or acknowledge it when I was younger. I spent five years being told it was ‘all in my head’ or ‘just puberty’ by my doctors, parents and friends. I refuse to be silent about something so prominent in my life now.”

20. “I always had joint pain. I was terrible at sports and I fatigued easily. I was constantly accused of being ‘out of shape’ and ‘uncoordinated.’ No matter how hard I worked on being active, I never got better. I eventually thought that was just part of who I was as a person. I didn’t think anything was wrong.”

21. “I never played sports. I’d rather stay indoors with a book because I always sprained joints or fell. Looking back, I think it was probably thanks to what doctors are sure is EDS.”

22. “Fatigue. Getting plenty of sleep at night but still barely able to wake up for school. Dozing off in class. Coming home, taking a nap, going to sports practice, then coming home and being able to fall straight asleep again. My parents always chalked it up to ‘growing’ and ‘hormones.’ But now, 20 years later, we know it was related to my diseases.”

What are some of the “signs” that you grew up with chronic pain? Share in the comments below!

22 Signs You Grew Up With Chronic Pain

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Chronic Pain: My Lifelong Companion

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Each morning is filled with hope and promise, a clean slate! That is what I have heard. That is not my reality. My moment of wakefulness is that precise moment my pain medication gives up and my body wins. Each morning for me begins with the shock of a severe wave of pain. It slices through my peaceful dreams and drags me into the agony of my reality.

Once I am orientated to this harsh, unforgiving place, I take my morning meds and wait. Wait for them to ease the pain and steal pieces of my brain. This, you see, is the only way I can get out of bed, stand and participate in life.

 

You see, my job is taking care of others. But that isn’t important. What is important is I am gainfully employed. I work a full 40 hours a week, sometimes more. So many of us with chronic illness do. My fibromyalgia, chronic pain, chronic fatigue, migraine, restless leg syndrome, history of TIA and seizure have isolated me. These are my demons. I have had these companions since childhood.

I missed my son’s wedding because I couldn’t travel three hours to where it was. I wanted to, but my demons had other plans. I have lost countless friends because I had to hibernate to make my companions leave me alone. I lost a job I had had for 11 years because of the battle inside me between my meds and my lifelong “friends.”

The battle is real. As a child I watched the world around me and wondered why the other kids liked to run. Running = pain; why would anyone want that? Now I’m in my late 40s. These demons have grown up too, and I understand. I was singled out. What the “normal” world can’t grasp is we did not ask for this. We are not “drug-seekers” or “disposable” members of society. We deserve a life too.

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Thinkstock photo via jujustr.

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6 Activities People Might Not Know Are Affected by Chronic Pain

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Anyone else with the same/similar condition knows that each day is different, but at the moment I am struggling quite a bit. The main issue I have is a lack of knowledge regarding what I can and can’t do. This isn’t just by friends and family but also myself. I do not know what my body is capable of and every day seems to be a struggle and dance to see what activities I am able to manage.

1. Cinema

Last night I went to the cinema to see a film I had been waiting to see with my husband for weeks! I had been sat on my rocking chair all day perfectly happy, in pain but happy, so assumed the cinema would be fine. This was a mistake! Within 20 minutes I was in agonizing pain. I was hugging the chair in front of me trying to stretch, I was breathing heavily, I kept having to leave the movie to try and stretch myself out in the bathroom! It was heartbreaking but a realization that I am not able to do activities that most think are perfect for someone with pain and joint issues.

2. Eating dinner in a restaurant

You would think, well you can eat dinner at home so you must be OK to eat dinner out too. I found out Monday this was a mistake, too. My body was in so much pain, I was so warm and then cold, I was shaking and eating a lot to get through the pain. The only comfortable position was when my legs were up on the bench with me. At first I had my legs up on the bench with my jacket over the top of them because I knew it wasn’t appropriate to have my legs on the bench. When I felt too bad having my legs up I had them down and crossed, and this was when the heat came over me.

3. Putting on a sports bra

I normally wear sports bras because they are more comfortable. With the pain I can be in I try to be as comfortable as possible, so no wired bra/sports leggings/ anything that doesn’t dig in or cause unnecessary discomfort. Unfortunately lately tight T-shirts and sports bras have become my nemesis! I have to contort my arms and shoulders to get them on and have taken to having to sit down because of the pain and dizziness once I have put them on!

4. Making a cup of tea

Now this one I know from my support groups is an issue for quite a few people. I have always been OK until now though so I didn’t realize how debilitating it can be! I love my tea! I have a pot at least once a day and twice on my days off work. Unfortunately, lately I cannot lift the kettle properly or the teapot when it is filled. My hands shake, I feel weak, I feel emotional. In all honesty it is one of the easiest activities to a non-ill-person and I do feel a lot of jealousy when my husband pours drinks for me and looks at me like I am mad for not having the strength!

5. Drying my hair

People always compliment me because I have long thick hair, but lately it has not been a blessing! I wash my hair in the bath because when it is wet in the shower it feels so heavy I feel like my neck could give way. I stay in the bath until my hair is part dry and then I go into the bedroom, sit on the floor and spend what feels like hours drying my hair. My arms ache, my head is heavy and I just want to sleep, but if I don’t do it my hair goes uncontrollable which I cannot handle! This being said, the past two times I have dried my hair with my hairdryer I have had to have a nap and ended up half ruining my hair, leading to me pulling lots out lots of hair trying to comb it when it is so unruly!

6. Putting on shoes

This past week I have stopped wearing half my trainers and shoes. In all honesty I do not have the energy for tying shoes. It makes me dizzy, it makes me realize how useless my hands are becoming and really upsets me! It is upsetting that it takes me so long to try to wear shoes that I used to take for granted. When we are rushing out the house I feel guilty, when I get my shoes on before we need to leave and people feel I am rushing them, when really I just know that even putting on shoes I will probably need a rest!

There are so many other activities I have found difficult through this difficult time in my illness, but I wanted to share a few so people in the same position know they are not alone. We are strong!

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Thinkstock photo by Nomadsoul1

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