@misswriter210 | contributor
I am a fiction writer from Ireland. Living alongside several conditions including Ehlers Danlos Syndrome, Dysautonomia, trigeminal neuralgia physically as well as Generalised Anxiety Disorder and panic disorder. I joined the Mighty after following the articles for some time. I submitted my first article after becoming a mother in the hopes of raising awareness of those who suffer with invisible illnesses as well as get rid of the stigma associated with being a mother with a hereditary chronic disease.
Community Voices

Don't take it for granted

Today I was invited to go for a picnic in a local park. I didn’t expect any major health violations for myself when considering whether to accept or decline this invitation. Needless to say I accepted and I headed on out to meet my sister.

There was no picnic benches within close proximity of the car park and due to two hungry toddlers that escorted us here, it wasn’t in our best interests to walk them long enough to find one. Instead we laid a blanket down and planted ourselves on the grass. I only sat long enough to basically stuff a soft roll and half a cookie down my throat and I had already felt like I could no longer sit there anymore. I had to stand. On standing I felt every single drop of blood drain downwards out of my face. The pain that surged from my hip down through my leg was so aggressive I now had a severe limp on walking. I looked like I had just been mauled by a pack of dogs. This limp I didn’t have only moments before the picnic. This day out hadn’t even begun yet and I already couldn’t wait to finish it.

I had watched as my sister hopped up off the ground only to bend over and roll up the picnic blanket. I watched as the lady across the way jumped up to chase her children who were running through the grass. I envied these people. All I did was uncomfortably sat on the ground as long as I felt I could. I waited until I felt the pain creep into my hips and I tried to get up then. After such a short time I still struggled to stand and I had to make the excuse to walk to the bin with the rubbish so I didn’t seem rude for walking away while the others where eating.

This small event ruined me for the whole day. It took every ounce of energy. I used all of it just getting up from the ground. The rest of the day was painful and exhausting. As the day progressed onwards, a lot more walking was involved. And a lot of heat too. My body was slowly giving up on me. I could feel myself getting weaker and weaker. I was really struggling to keep moving. So much effort was needed I had given myself a #Headache. But looking at me you would only see the struggle on my face, not much else. I didn’t even have the ability to stay long in the playground. Not being able to chase my eighteen month old just reminded me what a horrible parent this disease helps me to be. I walked around wishing our time here would just end already.

When it eventually did, I couldn’t wait to get home. I flew home to my own house and just lay on the bed. This day took all of only four hours and it basically killed me.

I wish I wasn’t ill. I wish at only twenty seven years of age I didn’t have to contemplate the idea of bringing a fold up chair with me everywhere I go. I wish I didn’t have to debate with my inner self whether or not I could actually go to something like this in the future. I wish I could have and wear more then one pair of shoes like a normal girl. I wish I had the ability to enjoy a walk around a park without feeling like I was dying inside and spending the whole time begging for it to end instead of enjoying it. I wish I had the energy to chase my daughter around for every hour of the day.

All of these things seem so simple, please don’t take it for granted. For some of us aren’t even able to enjoy the simple things.

Community Voices

It's not JUST a panic attack

I find it interesting in movies. When a character gets a fright and has an experience similar to that of a heart attack. They are left lying on the floor while someone calls the paramedics. Who come and do all the tests while the character insists what they have had was a heart attack. Only for the paramedic to make an entertained face followed by the words “It was just a panic attack”. Then as the movie or episode continues they are made fun off and reminded that their episode was “Just a panic attack” or to “stop over exaggerating”.

Just… The word used that I find interesting is the word Just. Being someone who suffers with generalized anxiety and #PanicDisorder I find this interesting.

A panic attack takes me over at the most unexpected times. It affects my day to day life in a drastic way. It makes me feel so alone in a room full of people because I feel as though my brain and my body are fighting one another. Here I am captured in the middle unable to escape. My mind knows that the situation isn’t a cause for panic and it tells me I’m stupid, this is silly and to calm down. Yet I have absolutely zero control over my own body which is feeling ill, dizzy, shaky and the symptom lost goes on. My surroundings no longer matter and the people are no longer there while I fight an internal battle with myself to stop panicking. I may just be sitting waiting for my appointment time but my body is reacting as though I am in the middle of a field about to be rail roaded by the world’s biggest bull.

I wish I could say to myself “oh look. Its just a panic attack” but to me it’s not just anything. Imagine experiencing what feels like a heart attack several times a week. Sometimes several times a day. That’s scary right? Right, it is. So scary. Imagine feeling that because you have to leave your house. Or because you have an appointment or because you have to make a phone call. You would avoid these things right? Yea. I avoid alot of things out of fear of panic striking. It is uncontrollable, unexpected at can happen at any time for absolutely no reason. I don’t know when it’s going to happen so I avoid situations where I think it might and yet a completely new situation that I’ve never panicked about in the past could cause it anyway.

You don’t stay at home all the time in fear of a heart attack. Because you’ve probably never had one before so you don’t expect it. But a panic attack is different. You’ve had many and each time as scary as the last.

So maybe when someone experiences a panic attack instead of saying “It’s JUST a panic attack” maybe say “I’m JUST so happy you are OK” and consider yourself lucky that you don’t have to experience them. A panic attack isn’t just anything. A panic attack is scary.

Community Voices

I'll never be use to the pain

To my Ehlers Danlos Syndrome No matter how long it has been since you first started attacking me. With issues that were MORE than just your typical injuries from a healthy and playful child. I will never get use to you. I say on a regular basis when asked how I live with the pain etc. “Ah I’m use to it” I’m not. I’m not use to it. I never will be. When I get use to a particular issue that I have, EDS throws another one my way. Or it makes the one I’m use to worse than it always has been. I say that because it helps me. It helps me to accept this is how I am. But most of all it saves the pity. It stops others feeling sorry for me. And then they don’t ask anymore. Talking about it hurts me and it upsets me and ive already shared double my body weight in tears because of this. But I’m anything but use to it. Even to consider saying such a thing is upsetting. I’m in so much pain everyday that I’m “use to it” . But I’m not. I can’t get use to this. Everyday I wish that I will wake up from this dream. And then I remember that dreams don’t hurt. Perhaps I wish I could enter a dream and then maybe, just maybe it wouldn’t be so bad. For me to get use to this would be to accept what it has done to me. I was very athletic in my past. I did athletics with long jump, my height helped me in being very good at the high jump. I have won trophies and medals for running. I played rounders, gaelic and basketball. Each new thing was slowly fiddled out as I could do less and less. As I got older the sports became non existent and my hobbies kicked in. Scuba diving, playing the violin, play piano and recorder, photography etc… My equipment is unmanageable in all now. I can’t do any of them. I hear stories on the regular of people who are supposedly worse off than me and they can manage these things. I envy them but that doesn’t change the fact I can’t. I can’t even work anymore. I sit here on the regular and I consider the life that this stole from me. Everything I was able to do and it took everything. Everything I loved… It took those things too. I’ve lost friends who couldn’t handle it along the way aswell. Cancelling plans is apparently a major no no when it comes to friendship. Understanding doesn’t seem to be a known personality trait for those I’ve encountered. I will never get use to that. I will never get use to having to give things up to something that is out of my control. I was athletic and talented and now most days I can’t even manage to get out of bed… I am a positive person and I remain optimistic and I see people embrace their condition. Accept it and love it because it made them who they are… And yea my condition has made me who I am, but no matter what I will never get use to living with something I hate. I am not use to it… It is just my normal.

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Community Voices

"Too pretty, too young" but still sick

They say, you’re too pretty to be sick. Or you’re too young to have such a thing. Somehow if I was old and ugly it would make me far more deserving of my suffering. You know I spend alot of time shedding tears on my bed when I consider how bad I am at such a young age. To be told I am too young for it is a constant reminder of just how bad I am. Where will I be in another ten years when I’m already at this point now? Oh and what about the looks thing? Too pretty to be sick? What has the way I look got to do with any of it? It’s funny how good looks and age actually work together to make you more of a fake. More reasons to add to the list as to why people don’t believe you. Just because someone might consider me too young or too pretty doesn’t change the fact I am still chronically ill and always will be.

Community Voices

It's not rare, it's just not known about

Being Chronically ill is difficult for everybody. But being ill with a condition that is considered rare is an even bigger burden. I don’t have enough fingers to count the amount of times I am asked “what’s that?” by a medical professional when I tell them I have Ehlers Danlos Syndrome. We go into see doctors and we go to hospitals trusting that they will know exactly how to care for us. But how can they when they have never even heard of your illness in the first place. I remember when I was diagnosed my GP told me that he had heard of it once. It was exactly three sentences in a medical textbook when he was in college and it was never mentioned or brought up again after that. I don’t think Ehlers Danlos Syndrome is rare. I think it is unknown and therefore misdiagnosed on a regular basis. This is exactly why raising awareness is so important.

Community Voices

Losing friends because you're chronically ill

Losing friends isn’t easy. Losing friends because you are chronically ill cuts even deeper. I have had many friends over the years. I thought I was a decent person. Good enough to hold onto. But then I began suffering. I started suffering with pain and subluxations. Continuous doctors visits and procedures made me a bit of a recluse. Crutches made me slower than my friends and all of this aided in me developing severe #Depression. All of these issues together didn’t come across to my friends as I was sick so I needed help. It came across as she’s no use, she’s not fun. Don’t hang out with her. And funnily enough that’s exactly what happened. They didn’t wait for me when I was slightly slower on my crutches. They raced ahead and I stayed behind with tears streaming down my cheeks because I couldn’t keep up. They didn’t invite me to hang out because they figured I’d say no or cancel. Which I’ll admit did happen sometimes because I physically wasn’t able. But then they just stopped asking. Assuming the answer before they even asked. I remember I had to cancel plans with a friend of mine on two occasions. Instead of accepting that I wasn’t able she said, and I quote “I’m not going to fall out with you over this, I just won’t invite you out anymore” to which I replied that I felt that was basically the same thing. As I got older I avoided making friends. Not having any friends at all was far easier than making friends and losing them. I’ve done that and it’s not easy for me. Those I did make, didn’t take the time to understand. Didn’t care to listen. Had no questions about it because they didn’t want to learn and so forgot about it. I stayed home on my bad days and only went out on my good days if I even bothered at all. This meant that they didn’t see the worst of my illness. They seen me at the best I could be. If asked they wouldn’t even be able to tell you what’s wrong with me. They wouldn’t know how it affects me. They have put me in a position where I avoid talking about it. Every few months I go in for procedures on different parts of my body. And everytime they are surprised or consider it no big deal. It’s not easy to admit I have no friends anymore. But losing them because of this, is actually the worst feeling in the world. If you have a good friend who cares and understands. Appreciates you and cares when something happens that you can’t go out. Or even cancels their original idea to just come and hang out on the couch with you because you can’t go. Hold onto them. Not all of us are as lucky.

Erica Clark

Loving My Body With Its Tattoos and Chronic Illness

When living with chronic illness, it can be a juggling act to maintain what is considered a “normal” life and doing what your body will allow you to do. In my personal experience, being 24 and having several incurable conditions, it can be discouraging. Thanks to postural orthostatic tachycardia syndrome (POTS), I have to be mindful of how I’m feeling that day and plan my day accordingly so I know how long I can stand at any point without fainting. With Ehlers-Danlos syndrome (EDS), I have to think about how badly my joints hurt and that is what decides if I get my shopping or cleaning done that day. Those are only two examples of many, and it can often feel like I get little say in what my body does. The concept of feeling like my body is a prison isn’t new to me. There are many times I have to take a nap when I don’t want to, have to pretend to examine something on the bottom shelf of the grocery store for an excuse to crouch down to prevent fainting, plan ahead and pack a special lunch if I’ll be out too long because my eosinophilic esophagitis makes it impossible to eat out anywhere. All these rules my body has set for me can make me feel like a prisoner, but when I was 22, I really thought about this and realized that is a harmful mentality to have. My body may be limited compared to most able-bodied people, but it is also the body I live in every single day — the body that gets me from place to place (even if it decides when), and the only body I will ever have. I should be glad to have it, illness and all. So, what could I do on the days I feel like my body is calling the shots? Was there a way to, in a sense, join how I felt inside more to my body? Although I have illnesses, very rarely do I see myself as a “sick person.” I’m just a normal person trying to live my life, so when my body sends me clear reminders that I have these conditions to take into account, I feel almost disconnected with the body I should simply appreciate having. After a lot of thought, I realized what would make me happy would be making my outside more of a reflection of who I am inside. Now, obviously this isn’t for everyone, and each person should find their own ways to heal emotionally and feel more at peace with themselves, but for me my answer was tattoos. Once I started getting tattooed, I realized what it meant for me. On my good days, I can look at my ribs and see the logo of my favorite band, and think, “Nice! I sure love Alkaline Trio!” and thoroughly enjoy having it. On my worst days, when I feel at odds with my body and like we will never get along, I look at my thigh and see my favorite superhero Wolverine, and feel like it is something that links my body to myself. It can be a difficult concept to articulate to those without chronic illness, but for me it really helps to fill the gap and remind me my body is my own and not a prison, but my home. Seeing reminders on the outside of who I am on the inside is a huge comfort in many ways. While some thought my tattoos to be a means to hide or cover my body, to me it is the exact opposite. Learning to love and appreciate your body is a tough journey for anyone, let alone those who have additional obstacles added on. Regaining a sense of control over my body with tattoos hasn’t helped me mask my body, but rather add to it. Will I regret any of my tattoos one day? Maybe; I can’t speak for 40-year-old me, but 24-year-old me has felt so many positive mental health benefits on a daily basis from them in just two years that it would be hard to trade my improved quality of life for the opinions I may or may not hold in the future. Again, I want to reiterate that tattoos are not for everyone, and that is totally fine. For me, they are exactly what I needed to express my personality with a body that simply won’t do what I want most days, but chronic illness doesn’t come with a “one-size-fits-all” solution. I would encourage anyone reading this to go seek your own solutions that will work best for you. The last thing anyone should do is ignore their feelings, to disconnect from their bodies, because it can be so damaging on mental health. No one is alone in feeling this way; it’s not strange to feel like you and your body are separate entities, sharing a close space and occasionally compromising. You can, however, find ways to bridge the gap and remind yourself you own your body, not the other way around. Your body is an amazingly unique and personal part of who you are — all the good and all the bad — and whether you appreciate it by decorating it with tattoos, trying out a new hair color, dressing it up in your favorite clothing style or even simply treating it well by drinking more water, it’s the only one you will ever have. So, be kind to it and to yourself as together you make a complete and beautiful person. Fully appreciating and loving yourself is a great feeling, no matter how you get there.

Community Voices

I've had enough so low

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Community Voices

Had enough of life

I'm giving up real soon just waiting the right day an right place all is planned


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Community Voices

A job!

After almost a year of searching high and low for another job that my fragile body could handle, a friend of the family has suggested me to one of her peers. It is only an hour twice a week but I have learned to savor any and every amount of income. Fingers crossed for me tomorrow that it is a good fit for my possible employer and me-and maybe even that I might be able to get a nice pay as well. Here is to hoping!

#CheckInWithMe #Fibromyalgia #EhlersDanlosSyndrome

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