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So I had another test yesterday at the hospital — an MRE to look at my small bowel. Over the last two years I’ve had more tests done than I can even recall. Blood tests, scans and the list goes on and on. Every specialist has different tests to run, and then when something comes back on the tests there’s more tests to run.

I can no longer count on one hand how many specialists and doctors I see. I wish I could. I keep a folder to try to keep it all organized.

I can also no longer count on one hand how many miscellaneous random elevated or low tests have come back that get back to me with no explanation for.

Sometimes I don’t know who is more perplexed. Me or my doctors.

I, like many, struggle with so many things. Those meetings with my doctors or a new doctor come with severe anxiety. I’ve gone over my medical conditions and symptoms more times than anyone ever should. And every time you have to explain it, it’s like having to get them validated over and over.

I am fortunate to have a good mix of doctors. Some good, some not so supportive. I tend to learn the most from them from the reports sent back to my general practitioner.

Yesterday’s test, like many over the last few years, left me in pain and barely able to leave the bathroom. But this test was different. I didn’t only suffer the physical side effects. When you have chronic pain, even the slightest amount of pain over and above what you regularly deal with can send you over the end. But today’s test broke me emotionally.

I finally had to admit to those around me a few months ago that I was had depression and that my anxiety was out of control. Admitting this was hard. I’m lucky to have a lot of people around me who didn’t question it, asked how they could help, and if I needed anything.

Yesterday’s test left me lying on the couch in stages of sleeping then crying, then sleeping then crying. There are times I feel bad and even guilty for being sick.

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I feel bad that my husband, who has his own medical issues, had to keep running for a cloth or a bucket. Or that the dinner I was supposed to make didn’t get made and now he has to figure something else out for dinner.

These are things that weren’t explained to me when I got sick. That being sick was going to make me sad. Sad for the losses I would experience. Sad for the amount of tests I would have to be subjected to. Sad for the feelings of helplessness when you’re sick and you see those around you struggle to try to make things better for you. That being sick was going to make me feel guilty. Guilty for the added pressure to my loved ones. Guilty for being that friend who cancels plans a lot. Guilty for having to call into work and telling them you just can’t make it in that day. That being sick was going to make me angry and resentful. Angry at the test and medications that are supposed to make me feel better. Some work but some have side effects that leave me feeling even worse. Angry that I can’t clean the house, again. Resentful of my friends who live the type of life I want to live. You know, the un-sick kind. Where you work and socialize and go about your day without having to worry about where you are spending spoons.

I’ve started seeing a doctor to deal with these bouts of sadness and anger and resentment. I’m nowhere near where I want to be. And I’m struggling more than ever to accept that this is the new norm for me. I’m working on a pain and illness emergency home plan. This will include having extra meals in the freezer, a pain step plan for when my pain is unbearable, and hopefully a plan that will make it easier for those around me to know what they can do to help me. Even if it’s just a little.

Having a chronic illness like Behcet’s disease is hard. And having chronic pain on top of it is even harder. But I survived yesterday, and today. And the days that go by aren’t always going to be easy. So if there’s any advice I can give, it would be to make a plan. And know that when you’re feeling hopeless and lost in your illness/disease, you’re not alone. Reach out. Join a group. Vent. And never feel guilty for how you’re feeling. You didn’t ask to be sick. I ask every day to be healthy. And even though I know I’ll never be the old healthy me, I know I will one day become the healthiest sick me I can be.

There’s a lot of trial and error that comes with being sick. Nothing ever works the same for every person. But don’t give up. Don’t stop sharing. Because you never know who might be reading what you wrote, and how those few words might be exactly what they needed to hear that day.

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I began the new year deciding that I would not let my illness control me anymore. Now, that is a lot easier said than done, of course, but I realized that one of the best ways of starting that task it to talk about it.

When I first started trying to cope with my illness in my day-to-day life, I tried to hide it. I tried to act like there was nothing wrong with me and that I didn’t think anything would be wrong with me. The problem with that is it is very lonely. I felt like there were very few people I could speak to about my illness, about the pain that haunts me every day.

I ended up trying to hide it from people who hadn’t seen me in a very long time. I didn’t bring it up when I would speak to them and I would avoid mentioning that there were certain things I just cannot do anymore. I would avoid speaking to people out of fear they would ask about it because I did not want them to worry. But I am in college. It is very hard to hide an illness when you live with three other girls and your brother lives across the hall with his three roommates. I was worried about how they would react. But then as I progressed through the semester, I began to see how wrong I was about how they would react to me.

I have strength and support from the people who know about my illness. They worry about me in the sense that if someone who is ignorant about my illness says something insensitive, they look at me to make sure I am OK. I have found how sympathetic my professors are and how much people who teach up to 600 students per semester can come to care for you.

But in this journey, I have also seen how little people can understand the struggles of someone with a chronic pain disorder. And that is why I resolved to educate people – to share my story and my experiences to show people that pain is often invisible and that those with chronic pain disorders are some of the greatest actors around.

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young woman in white dress standing outside in a field The people who are close to me would argue they notice I am in pain quite often — but those are the people who know me the best. Normally I am happy and outgoing and involved. People would never know how much pain I am in. But I realized that is not better for anyone. People need to know what it is like to live life the way many spoonies do. Why I wear only loose, comfortable clothing, why I bring food with me everywhere I go and why I will not go out with them after 7 p.m. It is not because I am lazy or boring.

I decided to bring my battle with my chronic illness to social media because people honestly just don’t know. I am not posting to make you feel sorry for me. I am not writing to earn your sympathy or to complain about my life. I am writing to empower spoonies everywhere. I am writing to explain the difficulties that people like me face every single day and to raise awareness for conditions you can’t always capture on a camera.

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Having something like the common cold isn’t nice. It makes you feel rubbish. Your nose is blocked, your throat feels like you’ve swallowed 10 razors and your head is pounding as if you’ve gone 10 rounds with a kangaroo in a boxing ring.

But when you have a chronic illness, it’s not just these symptoms you have to deal with. It’s the elevated pain levels and symptoms of your condition that you also have to contend with.  Many people find that regular illnesses, like a cough or cold, make their chronic illness so much worse. My example, for you today, is neuropathic pain.

Neuropathic pain is normally the result of an accident, illness or injury to the nerves in your body (in my case, it’s caused by cancer). There are three main types of nerves in the human body.

1. Motor nerves send signals from your brain and spinal cord to the muscles within your body, allowing movement such as running and walking.

2. Sensory nerves are nerves which send messages from your skin and muscles back to your brain and spinal cord, allowing you to feel pain, temperatures of things as well as whether something is rough or smooth… the list goes on.

3. Finally, there are automatic nerves which control temperature, blood pressure, heart rate and many other functions within the human body.

And, just for good measure…

4. There is a fourth type of nerve which allows us to have reflex actions to stimuli that hurt called interneurons. Imagine these interneurons as a bridge between your sensory and motor nerves. If you touch a hot kettle to see if it’s hot, as you’ll feel pain and your instant reaction is to move your hand away from it as quickly as possible. This is thanks to your interneurons kicking in telling your motor nerves to move away from the danger as quickly as possible.

Anyway, enough of the biology lesson.

Neuropathic pain doesn’t go away. The damage to the nerves is permanent. For me, the pain is in my legs, thighs, buttocks and back. It’s always there… always. Whether I am driving, socializing at a friend’s house, wheeling around town or sitting through a lecture at university. You manage the constant pain in your own way. People may look at you and not even realize you’re in pain because you’ve almost perfected putting on a brave face and managing to hide it somehow. But when you have the flare-ups… now that’s a different story.

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It’s hard to accurately describe just what it feels like to someone who hasn’t experienced neuropathic pain. I guess the best way of describing some of the sensations is that your legs feel like they’ve been set on fire, you’ve been stabbed with hundreds of pins and someone is desperately trying to push them further into your skin, you’re legs are tingling, you’ve got electric shocks coursing through your body at a ridiculously fast rate and this is all at the same time. The types of pain differ…

The pain can bring on anxiety attacks, aggression, severe mood swings, brain fog, confusion, crying, anger outbursts and even suicidal thoughts (if this is the case, please tell someone you trust).

Even since having neuropathic pain at the age of 5, I can honestly say I am still no expert on the best methods of reducing the severity of pain. Each flare-up is different, just like each day is different. But there are some things I can do to try and gain back some of the control that I feel like I’m losing when I have what I call a flare-up day:

1. Rest. Rest is very hard if you’re in so much pain. Lying in bed doesn’t work, sitting dow doesn’t work, standing up doesn’t work, walking doesn’t work. But unfortunately, I’ve found that you have to do one of these things. Find the motion that causes you the least discomfort. If you can’t sleep, don’t panic. For me, I define rest as something which lowers your heart beat and blood pressure (this is not a scientific fact… it’s my definition to make me feel better if I cannot sleep).

2. Remove restrictive clothing. If you’re at home and you’re experiencing pain in whatever area your nerve damage has occurred in, if it’s safe to do so and you are happy to, I recommend removing any clothing touching that area. I often find that if I’m experiencing pain and wearing jeans, the feel of the material and the pressure of it can make it so much worse. Take them off and put on a light dressing gown. If you can’t do this, try and put something else on like loose tracksuit bottoms.

3. Put on a comedy. Try and watch something that’ll make you laugh. If you’re in the living room, put something and actively try and listen to it. Even if you end up getting off of the chair, pacing up and down the room, moving into a random 10 second handstand and then end up lying on the floor, have something light hearted on that you can attempt to focus on. People say laughter is the best medicine… and let’s face it, you need to laugh right now otherwise you’ll probably cry.

4. Or put on some music. I think some upbeat sounds are a good choice or a soft, slow rhythm album.

5. Drink your favorite soft drink. I personally go to Hot Ribena with honey, a good cup of tea or a hot chocolate with marshmallows. If you’re unsteady, try and use a flask to drink hot drinks or a child’s cup (that might sound silly or patronizing, but you’ll thank me later).

6. Remember to eat. When we’re poorly, we sometimes forget to do the basic things. Try and eat something even if it is just plain toast.

7. Remember to take your medication. Set an alarm to remind you and please take them as instructed.

8. Call or text a friend, significant other or a family member. If you’re able to, drop a text to that friend who understands you. No, you aren’t bothering them. A while ago in a deep conversation, I said to my friend “I must really get on your nerves sometimes. All I feel I do is moan to you about one thing or another,” He told me that if that is how I felt, then my idea of friendship may not be correct because real friends are always there for you in any way they can be. He asked me to look at it from his point of view and said, “If it was the other way, you’d help me without a doubt.” Now that is true. Be honest with them. They’re your friend for a reason.

9. Talk to who you live with. Let them know what’s happening and how they could help.

10. Write down how you feel, what you’re thinking about or what you’ve literally just remembered. Writing down how you feel can help you manage your emotions and the reasons as to why you feel like you do. Come back to it when you’re feeling a bit better.

11. Scream into a pillow. It helps. I sometimes even hit it… just for good measure. For me, it releases tension, too.

12. Cancel that social arrangement. If it’s 10 p.m. on a Friday night and you’re meant to be meeting your friend at midday on Saturday, it’s OK to let them know what’s happening and that you’ll have to cancel because you need to rest and recover. You need time to recover, recuperate and get back your emotional and physical strength. Think about you. It’s not selfish.

13. If you’re immune-suppressed, like me, and you know someone isn’t very well with a possible viral illness, rearrange to meet them when they’re better. Now, this might sound unkind but think about you. Explain to them that you’ll wait until they’re a bit better… be honest. If they’re your true friend, they’ll understand the reasons why. Again, this isn’t selfish. It’s necessary.

14. Have a self -care box. This could contain your favorite moisturizer, that fragrant hand cream you fell in love it, that yummy chocolate bar, the soft and snuggly blanket, a hilarious DVD, delicious hot chocolate sachets, a funny photo, a stress ball, boosting vitamins, a joke book… anything you want in there, put in. It’s your go-to box when you need to look after yourself. Just remember to top it up regularly.

15. Try and wash. Brush your teeth, wash your face and, if you can manage it, have a shower, too (depending on the location of your pain). Brushing your teeth and washing your face may make you feel better but if you can’t manage that today, try not to worry.

16. Try and keep a journal. Write about what happened that day, how you felt, why you think you felt like that, what positive things happened during the day, what you’d like to improve on and how you’ll do it.

I’m taking part in the My Mighty Month challenge. It’s day five and I’m loving it… and I’m writing and thinking about positive things I’ve not really considered before. It’s good fun and quite therapeutic. We all have bad days whether we have a chronic illness or not. It does happen.

These suggestions are not anything like a “miracle” but maybe, just maybe, they’ll help someone you’ll out one day.

I’m not at all saying anything along the lines of,“My chronic illness is worse than yours…” because it’s not. We all experience pain and sadness with our conditions sometimes and that’s OK. We will never fully understand what each other has to deal with in life because you aren’t them, even if they’ve got the same condition as you. You can’t teleport yourself inside their head to get their exact perspective of things but you can be empathetic towards them. Let them know you aren’t judging them. You can’t always put on a brave face but what you can do is remember that taking time out for yourself is not selfish, it’s healthy.

Recovering and time alone isn’t selfish, it’s necessary.

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The reports we see and read about prescription pain medication don’t always tell the full story. Information and opinions often focus on the “opioid epidemic,” leaving out the experiences of millions of people who use pain medication for serious illnesses and conditions. The side effects, stigma, and even effectiveness of chronic pain medications aren’t often a part of the public discussion surrounding these drugs.

We asked our Mighty community with chronic pain what no one talks about when it comes to pain medication — but should. To help people truly find relief from their pain and increase compassion and support for those who use pain medications, these challenges and concerns must be brought into the open.

Here’s what the community told us:   

1. “I feel like I cannot ask for pain medicine that I need (narcotics) because I’m terrified I’ll be labeled a drug seeker. This happens when I’m admitted to the emergency room and when I talk to my regular doctors as well.”

2. “I have to decide when the pain is severe enough to warrant pain medication. When you live in chronic pain you can get used to the background pain and gradually adjust your life around it.”

3. “A common erroneous belief is that opioids always cause euphoria/a “high”/etc; not true. I’ve been prescribed many different opioids over 20 years of pain treatment and have never once felt an emotional effect such as feeling high/euphoria/feeling emotionally ‘better’ or happier in some way. Not once.”

4. “For me, I think it’s the feeling of abandonment by my doctors. Everyone seems to pass pain management and quality of life off as someone else’s issue. I feel like my doctors only care about keeping me alive and not what being alive is like for me.”

5. “It was never discussed with me how much of my life I’d get back with pain relief. That was a gift.”

6. “How it can and does affect our sex lives! Medications not only have side effects but they interact with a lot – heck, even vitamins do. Often it seems like doctors forget to mention possible sexual side effects because they’re too timid or don’t think we have sex.”

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7. “They do not work nearly as well as people think they do. Somehow people think we take medication and become hooped on them. Well, no, because it is dealing with the pain but only to a pretty limited degree. More like pain dullers than painkillers. If you are on pain killers there is an assumption all medications are pain killers and that is all we are looking for. Well, no, we are looking for pain management.”

8. “We don’t usually want it. There is a stigma that we don’t actually need it and just need to exercise more or eat better. It’s not that simple. The side effects are miserable but still outweigh the pain of not taking them.”

9. “No one brings up the battle. The battle between is your pain bad enough to deal with the side effects of constipation, brain fog, dizziness, lethargy, possible addiction. Or can you just battle with the pain yourself.”

10.The weight gain that comes along with taking meds for pain has made me feel so self-conscious and uncomfortable in my skin. Learning to love and accept myself again when so many things are out of my control has been a tough hurdle to get over.”

11. “Not all of us can use pain medication. Narcotics/opioids sometimes have zero effect on certain people with lesser known disorders.”

12. “Talk about the price and the epidemic of people who have had to choose between medications and food due to the regularity of needing to take medications.”

13. “It’s OK if you decide you want to stay away from them… some doctors will try to make you feel guilty if you don’t want to take them. It’s a personal choice that every individual should make on their own. (P.S. I am not against them, I just know too many people who have told me their bad experiences and it’s a personal choice.)”

14. “The emergency that can happen if you run out and can’t get a refill quickly. You don’t want to press too hard about it or go to the ER because you’ll sound like a drug seeker. So, you deal with all the alternative methods for pain relief (that aren’t as effective) and put your body through the wringer of being in a pain crisis, which can elevate your pain levels for long periods of time after you even get your prescription filled.”

15. “I don’t see much talk about long term opiate use… The fact that our bodies build up a dependency to the medications we are prescribed (some of us anyway) and the fact that people can become physically dependent on many different medications… and that does not mean they are addicted. People have become so afraid to talk openly about the pros and cons of their pain medication experiences out of fear they will be judged, labeled, and ostracized! These are certainly topics we need to see out in the open!”

16. “If the object of pain management is ultimately to reduce reliance on pain medication and increase functionality, then there has been a gross lack of forethought by health authorities as to what the end game of this strategy actually means for patients. The lack of support for withdrawal symptoms may cost lives and cause widespread, horrendous suffering.”

17. “We have to choose between certain medications because they can’t be taken together. Like, I have insomnia, anxiety, and muscle spasms. So at night it can be a gamble of which problem is currently the ‘worst.’ Can’t treat the muscle spasms and insomnia at the same time because the interactions can be so bad you can stop breathing. At the very least, I’ll have a very hard time waking up in the morning.”

19.Side effects. I have had several prescriptions and no doctor ever discusses possible side effects or other solutions. They just expect you to read the pharmacy pamphlet and be done. There is so much more associated with pain medication that should be discussed. Some of the side effects harm more than the medicine helps.”

20. “Medication can disrupt your life just as much as the pain. The medications can cause severe stomach upset, make you drowsy to the point you can’t function and cause constipation that leads to dehydration.”

21. “Needing daily medication to live a healthy and fulfilling life is nothing to be ashamed of. My doctor never mentioned the stigma behind the medication I take and the way people would look at me. This dialogue needs to be established early on. Doctors need to reassure their patients that it is OK to need medication to regulate their pain.”

Editor’s note: Any medical information included is based on a personal experience. Please consult a doctor or medical professional before starting or stopping medication.

What isn’t often discussed about chronic pain medication but should? Let us know in the comments.



21 Truths About Chronic Pain Medication No One Talks About

Over the course of my 18-year journey with inflammatory arthritis and chronic pain, I have encountered many different situations and people along the way. Since it took me 16 years to receive a correct diagnosis, many treatments, therapies and even surgeries were tried.  Unfortunately, none of them were successful since I wasn’t being diagnosed correctly.  I struggled with debilitating pain, especially in my heels. My arthritis mainly attacked my feet and spine, but my feet were highly affected, causing me to not be able to stand or walk without severe pain. As a result, before being diagnosed, I would often use a wheelchair if I was going places that required a lot of walking such as a mall, a supermarket, etc. These
profound experiences while using a wheelchair are what inspired me to write this article today.

I was only in my 20’s, and struggled with having to accept that I needed a wheelchair to go to the same places as “normal people.” I would tell my mom that if we were going to go to a mall, we needed to go somewhere far, a place where I wouldn’t run into anyone I knew. I thought to myself, what would I say if I saw someone I went to high school or college with and they asked why I’m in a wheelchair? Would I say, “I have chronic pain and the doctors have no idea why?” Would I lie and say, “I temporarily hurt something and I’ll be healed soon?” All of these questions plagued my mind every time we went to the local mall or a place far away. I even thought strangers would ask me why I was in a wheelchair because I looked healthy and completely fine.

However, this did not occur.  In reality, not one single person asked me anything. Not one person even looked at me. I was completely invisible to the world.  It was an unfathomable feeling, one I had never experienced until being in a wheelchair. As my mom pushed me, I would look up at people and try to make eye contact, but no one would make eye contact with me. I was dressed nicely, my makeup and hair were done, yet none of that mattered. I wasn’t there to these people who passed me by; maybe I wasn’t even considered a person looking at them. At times people would smile and talk to my mom, but never to me. To think I had spent so much time worrying what I would say to someone if they spoke to me, when in actuality I felt completely invisible to the rest of the world.

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Every single time I used a wheelchair, no matter where I was, this was my experience. Until one day, when something remarkable happened that I did not expect or foresee. As my mom pushed me in the mall, we passed a group of young adults with Down syndrome. The moment I came closer to them, several came up to me and started saying, “Hi… Hi…” in the sweetest and most genuine fashion. They were filled with smiles and kept waving. It was almost like they couldn’t wait to be my friend and talk to me.

Of course, I replied with “Hi everyone,” and smiled back at them. It was something I will never forget.  Their warmth was something I had never experienced before in interactions with strangers. It really touched my heart in a way I can’t fully describe. I was not invisible to them; instead I was completely visible and worthy of greeting.

This really got me thinking. Was I only visible to a group of individuals society often marginalizes and makes invisible as well? Why didn’t other people react in the kind manner they did? Was it the kind of empathy that could only be felt from one marginalized person to another? Why did people without a disability make me feel so different and invisible?

I felt the need to research this matter and see what has been written about this topic. I discovered an article entitled Evolved Disease-Avoidance Processes and Contemporary Anti-Social Behavior: Prejudicial Attitudes and Avoidance of People with Physical Disabilities. It discussed the theory of why people act in an avoidant manner toward people with disabilities. The article discussed how from a historical perspective, it would have been an adaptive survival skill to be able to identify diseased individuals and not interact with them, due to the high contagion factor. Psychological mechanisms have evolved from this adaptive skill, in which unconscious cues are activated when a person sees a disabled individual, i.e.: disgust, avoidance.  Moreover, it suggests that people tend to feel anxiety, tension and discomfort when interacting with disabled individuals. For example, a study revealed that people tend to smile less and gaze more at a disabled person versus a non-disabled person.

Clearly, the research had stated what I discovered from actually being disabled myself. But what are the social implications of these findings? I believe people are so afraid and fear their own mortality so much that they turn away. Some people don’t want to acknowledge sickness, disability, and difference. Maybe they don’t want to believe it exists or that it could happen to them. However, it can leave the disabled population feeling ostracized and unimportant. Moreover, it leads them to feel invisible. At least, that’s the way I felt.

The way people reacted to me was dehumanizing. It was without dignity and respect,
our most basic of human rights. We all want to feel acknowledged and not invisible, whether we have an invisible or visible disability, or use a wheelchair or not. It is time for more people to acknowledge that people with any kind of disability want to be treated in the same humane fashion as the “well” population.

This experience changed my life. Whenever I see someone who is different or in a wheelchair, I always go out of my way to try to make eye contact with them, smile and say hello.  Unfortunately, people are so trained from being invisible for such a long time that they often do not make eye contact back. But when it does happen, something special often occurs. Their smile is so genuine and appreciative that it is hard to think why someone would ever not acknowledge them in the first place.

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I had to retire through ill health from work when I was 28. I stopped work, but obviously my pain didn’t stop. I wasn’t fit for working and I wasn’t fit for doing anything else either. I stayed at home day in, day out. I read, I watched daytime TV, I had a few hobbies, but other than my husband and occasional family visits, I saw practically nobody.

I lost my confidence.

I could have easily become a recluse. It would have been easier than facing going out and meeting people and trying to have conversations.

What could I talk about?

I simply had nothing to say.

I felt like I only had my pain.

I thought people didn’t want (or need) to hear about  me, my pain or my life. My life… my boring life. I was in chronic pain. There is a strange mix of awkwardness, embarrassment and guilt that can come with any chronic condition. So I probably wasn’t exactly a bundle of fun.

Perhaps I had anxiety. Or perhaps depression. Chronic pain and retiring so early probably warranted that. I didn’t acknowledge it at the time, though… nor did any doctor I saw. People on the outside wouldn’t have seen it. I smiled my way through life. But I wasn’t always smiling on the inside. Now over 20 years later, I look back and realize that I was dealing with more than just the physical pain.

I hope that the emotional side of chronic pain is recognized and addressed more nowadays for other people.

I got through it, though. I think a big change happened with the more widespread use of the internet.

I was able to have conversations with people in all parts of the world. Whether I was playing games or learning new crafts and hobbies, I was actually chatting to people. A skill I had almost forgotten.

Then I discovered online communities for people with similar pain to my own. I was able to discuss my pain and listen to other people with the same problems. Our own experiences and thoughts were helping one another. I found out many of them were in the same position as myself. They didn’t socialize.

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But suddenly we were socializing.

We had people to talk to.

Each other.

The internet grew. I grew. I helped people. I realized that despite my condition, I could still do something. I could still be someone. My confidence grew. It’s still growing.

I think I’ve learned that I’m not just about my pain. There’s more to me.

And in the process of learning that, I’ve met a lot of lovely people. People who aren’t just their pain either. And some of us have become good friends. We’ve never met, and the chances are that most of us never will meet, but the friendships are real.

I often say that my friends live inside my laptop. They really do. I’m just sorry I can’t offer them a coffee.

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