Dating With A Chronic Illness

Something I've wanted to write but have been too afraid to.

I always see articles on Facebook "What it's like to date someone with a chronic illness", "What it's like to date someone with an incurable illness", "What it's like to date someone with chronic pain".

I haven't seen an article saying "What it's like being in a relationship for someone with an incurable illness". So here it is.

I was in my previous relationship when I got diagnosed. We were happy and in love. He dealt with it just fine. Partially I think because we were already in a serious relationship and he felt as though he had no choice. He never complained. He never blamed me. He didn't love me less.

When things didn't work out I worried that I would not find someone that would be understanding and choose to be with me. There's a difference in already being in a committed relationship when getting diagnosed and having to tell a new guy you are dating that you are sick.

My heart hurt. I really didn't think I would ever find someone that would be willing to date me knowing what I had, because why would you? Why would anyone walk into a relationship knowing the other person was sick?

Those were the thoughts going through my head. Iv'e always struggled with my self worth. I don't think I am pretty. I don't think I have a nice body. I am not what guys want. So to put all of those things together and then add EDS and POTS to it, no one should want me.

I met Zach last April. We texted for a while and then he asked to take me to dinner. I really liked him but I was so nervous to start dating again. We went to dinner and the whole time in the back of my mind I was thinking "Act normal. Don't move too fast or something will pop. Don't stand up fast and pass out". Every move I made was carefully thought out. I wanted to appear normal. I even took all of my braces and tape off.

I didn't know what to expect after that. Again, I don't think that highly of myself so part of me wasn't even worried about telling him because I didn't think he would be interested in seeing me again. But he was.

I went over to his house the next night and we watched a movie. I thought I was being as "normal" as possible, until he asked "how are you comfortable sitting like that". BUSTED.

I decided it wasn't fair to keep it from us. So I told him. I definitely down played it. Just told him I had something called EDS that made me really flexible and that sometimes I would pass out. But anyone who knows my boyfriend knows the first thing he did when I left was research the crap out of it.

He took the news like a champ.

I thought the hardest part would be to tell him. Turns out the hardest part is throughout your relationship dealing with all of the guilt and emotions.

He asked me to be his girlfriend. I kept saying no. Part of me wasn't ready for a serious relationship but mostly I felt like if I said yes it would make me a selfish person. I didn't want him to take on the burden of dating me. I didn't want to ruin his life or make it difficult.

I remember being SO nervous to meet his family. In my mind I thought when they found out what I had they would think that there son deserved way better than me. To this day I still think that he does deserve someone so much better.

We have been dating for over a year now and I still struggle daily with feelings of guilt and worry. Since we have started dating I have had 3 surgeries, 1 ER visit and probably 10,000 doctor appointments. There has been multiple times where I have passed out in front of him, dislocated things, cried because I was in so much pain, cancelled plans and even snap at him because I am tired and in pain. Even after all of that he still stayed. He never even thought about walking away. He rubs my muscles when Im sore, he helps me put my joints back in, he goes to doctor appointments, physical therapy and surgeries with me. He lets me be angry. He lets me be frustrated. He holds me when Im scared. He holds me when I cry. He holds me when I can't handle the pain anymore. He takes care of me after surgery. He is constantly asking me how I am feeling. And not once has he ever acted like it was inconvenient to have me in his life.

He gives me no reason to feel the way that I do. I think it is just part of the diagnosis.

I know not every guy is as patient and caring as my boyfriend. It takes a real man to walk into a relationship ready for what the future has in store for me. Not all guys would be able to stay in a relationship like this. I am one of the lucky ones and I wake up every morning SO SO SO grateful that I found him.

Bad Days

Another sleepless night. Another night of tossing and turning, desperately trying to find a comfortable position. Everything hurts. All the way from my toes to my head. Even my skin hurts.

The wrinkles from my bed sheets hurt me when I lay on them. My skin feels bruised. The pillows on my bed aren't strong enough to support my joints.

My body won't regulate temperature. I get cold so I turn my heated blanket on. My feet are like ice. I change into sweats. Then I get too hot. I change into shorts. Now my body is cold again.

I continue to toss around hoping I will find relief. I keep telling to myself "It's just a bad night". Ive said this to myself three nights in a row. "Its just a bad night, tomorrow will be better".

I wake up. Everything hurts. I move. Everything pops and shifts. I close my eyes and take a deep breath, yelling at myself "You have to stand up". "Get up". I stand up. I stay there, waiting for my vision to come back as my heart regulates the change of position. Im tired. I hurt. I want to go back to bed. "It's just a bad day".

I spend my day wishing I was in bed. Wishing I wasn't using all of my energy pretending to be okay. Wishing for a day where I wake up and am excited for the day ahead of me.

I get home after a long day and prepare myself for another long night.

This is my everyday when I have a flare up.

Living with Ehlers Danlos Syndrome is Like...

 One of the hardest things about having EDS is trying to explain your symptoms and the way that your body feels. EDS patients are typically not listened to, believed, diagnosed correctly or treated correctly. Not everyone's symptoms are the same, which is why it makes it so hard to diagnose. 

 One of the best things I have gained from my diagnosis is the amazing people on the online support groups, people from all around the world can help support and educate each other. 

 Personally, for me, EDS feels like I am constantly drowning. It's like when you are in the ocean and a wave knocks you down and before you can get up and catch your breath another wave is already there to knock you back down. 

 It's terrifying knowing that your pain will never go away and it will never get better. You can't trust your own body. It's a constant battle of what I want to do and what I am able to do. It's not just living with the pain. It's living with the shame, the guilt, the depression, the hopelessness, the misunderstanding, the judgement, the embarrassment, the betrayal of your body, and the self hatred. 

I had some of those people write about how EDS feels to them.

Here is how other people describe their EDS...

Tony Michelle Adams "It feels like shredded muscle after I used to do a heavy lift day at boot camp... Only now that pain and weakness is daily, the muscles never seem to heal and I have hundreds of trigger points the size of marbles throughout my body"

Deborah Searle "I watch my husband recovering from the anesthetic he had from a major op the other day and I realized that is what I'm like on a really bad fatigue day. Not able to stay awake can't think forgetting my words etc!"

Susan Newcomb "My daughter describes her full body pain like the throb you feel after you stub your toe."

Jocelyn Joy "After listening to my friends describe being pregnant, I realize I feel pregnant every day."

Lindsey Bertagna "Whoever has the voodoo doll of me is running out of places to stick their pins!"

Brandi Fickling "It feels like I stayed at the club all night drinking and dancing til 4am every night, but I didn't. I watched Netflix and fell asleep at 10."

Holly Sayers "It feels like the day after a marathon you ran and completed, but never trained for.....indefinitely"

Suvi Andersson  "When I lie down it feels like my pelvis breaks down into small particles and spread over the bed. When I need to get up I must first collect all those fragments and ask them to please hold together before I can rise. After a while I hear the distinct pop from my shoulder, dropping into place. I have to sleep on my side which means my shoulders collapse and fall in on eachother, pressing on my throat. Going to bed is not that restful when you need to plan your every position and prop your limbs up. And every time you need to move you have to wake up and rearrange your body. It can take a while to find a position that will work for most body parts. Many nights I can't fall asleep at all."

Stacie Lou "Yesterday is always better than today. My doctor has told me I have the body of a 70 year old...I'm only 21!!"

Jocelyn Joy "It feels like I have miniature lead balls hanging from each individual muscle. It feels like my body is a ball in a pinball machine because I bounce off surfaces all day long. I feel like a social outcast because I cant do things that others can like running and skiing competitive sports or having a drink at a bar in the evening. I feel like an overachiever because I have to work twice as hard to show people I'm not lazy. I feel like a sensitive flower because I have to be so careful that the environment I'm in isn't too loud, or bight, or cold and I have to avoid all kinds of food to not exacerbate my symptoms. No gluten, dairy, sugar, coffee, alcohol, or grains. Pretty soon I'll be living off air and water and Himalayan salt crystals."

Caitlin Bignold "I wake up feeling like I've just walked a marathon"

Joey Killian-Major "It feels like being an invisible hurricane!"

Amanda Kate Forsythe "It feels like trying to wake up after a restless sleep, only to realize that someone has been taking a sledgehammer to your shoulders and hips the entire night."

Lindsay Prososki Lee "I hate the fatigue more than I hate the pain. I feel like I'm only half alive."

Aubrie Williams "You know that tired feeling you have when you wake up at 2AM with the groggy eyes and headache? It's kinda like that all the time. You know the sore muscles you get when you haven't exercised in a long time and you hit it hard at the gym? It's kinda like that all the time. You know when you're sick with the flu and you've been in bed for a week and you feel weak and hot and dizzy when you stand up? It's kinda like that all the time. You know that tired sore feeling after a car accident when all your muscles are screaming from the trauma of being jerked around and you ache all over? It's kinda like that all the time. You know how you feel when you wanted so badly to do something with your friends and something comes up and you hate that you have to cancel? It's kinda like that....all the time."

Michelle Wilkinson "The worst pain EDS causes, is when a loved one doesn't believe you."

Linda Alcock "EDS means our bodies constantly battle themselves so because of the level of pain our bodies fight our energy levels suffer the less energy the more fatigue the more fatigue and pain the harder it is to function or have a good sleep it's a vicious cycle"

Tammy Wild "Like when you go to the gym, and do a stretch and hold it for 30, and feel it burn and pull and psych yourself into keeping going, until you just can't stand the muscle pain anymore, and release. Except you can't ever release."

Meshell Lynn Bergeron "I feel as if I'm drowning in a pool without being saved or suffocating. Just a never ending struggle to survive."

Chloe Downes "Your joints are so fragile it's like walking on noodles,one wrong move can cause lasting damage."

Marianne McNally "feels like I have lost my liberty" 

Johanna Hinch "Like walking through quicksand. The you move, the more you get sucked in."

Emily Rose "Ignorance is almost worse than the pain, for me. When someone is just so cruel to you because it's an invisible illness it really makes you feel much worse about yourself."

Jessica DeLuna "It feels like trying to stand on the sandy ocean floor with waves crashing down on you."

Kim McDougall "I think one of the hardest parts about EDS is that is an invisible illness. People, even family, don't really believe that I can be in pain or exhausted all the time. It must be my fault somehow. Like I don't get enough exercise or I don't eat properly. So I stop complaining about it and that leaves me feeling isolated"

Rebekah Bears "It feels like I'm dying, even though I know I'm not. I'm alive, but I'm no longer living."

Sonja D Simmons Long "Just like the stretch marks from pregnancy and those scars my internal organs are pulling apart. I can feel it happening daily."

The Truth

Everyone who knows me knows that I am a workaholic. The last few months I have felt my health decline. I thought it was just a flare up, I am now accepting the fact that this is my new reality. 

This month is a new change for me. I made the decision, after months of going back and forth, to go part time at Wayfair. This is never something I wanted to do, but I am not physically able to keep up with my "normal" routine anymore. 

Although I know it is the right decision for me, I feel myself becoming the person I told myself I would never be. 

For the longest time I have been too afraid to be honest about how EDS has changed me. But here it goes. 

I am scared to be honest when people ask me how I am doing. I am scared to say "It's getting worse" or "My health is scaring me". People always ask "Are you feeling better?", my automatic response is "Yeah I'm fine"or "Nothing I can't handle". Or sometimes I'll even make jokes to hide my pain. Truth is, no. No, i'm not feeling better. No, i'm not fine. No, taking a day off work did not help me feel better. No, the pain is not something I can always handle. 

Truth is, I am exhausted. I am so tired of fighting the pain. I am tired of feeling and hearing my body pop and shift out of place every time I move. I am tired of putting a brave face on to make those around me feel better. I am tired of all of the doctor appointments. I am tired of limiting myself. I am tired of all of the tape, braces, physical therapy, x rays, MRI's, blood work, EKG's, and surgeries. I am tired of hearing "You are too young to be having this many health issues". I am tired.

I can feel myself breaking. Piece by piece. One body part after another.

I don't get a break. I don't get good days. I don't get relief from the pain. I don't remember what if feels like to walk without pain. I don't remember what it feels like to sleep without difficulty. I don't remember what it feels like to dance without pain. I don't remember what if feels like to be well rested. All I know now is pain.

All I can do at this point is take it one day at a time and hope that in the future someone will find a way to stop this painful illness. 

I Grieve For The Person That I Was

  Chronic fatigue is so much more than being tired. Every single day I fight my own body. Getting out of bed takes more strength than I admit to. Usually by the time I find a position that allows me to sleep without any dislocations I get about 2-3 hours of sleep if I am lucky. Every morning when my alarm goes off my mind and my body have a fight. My brain tells me that I need to get up and function like any other normal person, while my body screams and yells at me to stay in bed. I find the strength (most days) and get ready for work. While Im in the car driving I am fighting to stay awake, my eyes tearing from the exhaustion and pain. I make it to work and sit down at my desk. 

  The next 8 hours I find myself shifting in my chair, feeling the pain of my tailbone and pelvis shifting. I move my shoulders and my arms, trying to pop everything in from typing all day. My vision gets blurry from the headaches I get from my neck muscles working harder to support my head. My mind gets fuzzy from the brain fog or from the lack of sleep. My jaw gets sore from the constant popping in and out while I am on the phone with customers. My body tells me to leave before my shift is over, most of the time I don't listen. Trying to keep my pride by ignoring the pain and exhaustion. I go home and get into bed. Most days I stay there until its time to sleep. Trying to regain the strength to make it through another day. I try not to think about the week I have ahead of me. Thinking of how I am going to make it through the week often leads to overwhelming feelings of hopelessness and thoughts of how long I will be able to continue doing this. 

  Some weeks are worse than others. This last week was a rough one. It included only working 2 of my 5 shifts. There was a few days where I was in bed from noon until I went to bed. I lay in my bed thinking about all the things I want to be doing but instead I am sleeping my life away. 

  The days that I have off I usually spend at appointments. Usually physical therapy, they help put me back together so I can make it through my week a little easier. After my appointments I usually am so tired and in so much pain that all I want to do is sleep. I try and fit in a few fun things, but end up paying for it for the next few days. 

  Everything that I do requires thought. Do I want to go out with friends? Will that make the next few days of work harder? Do I want to go to the gym? Or will I dislocate something and then going to physical therapy was all for nothing? Do I try and pick up an extra shift to make up hours? Or will that lead to me calling in again? 

  The feelings of guilt then kick in. I think about everyone in my life and how my condition changed not only my life but also theirs. I feel like I disappoint a lot of people. I feel like I should be able to go to school and work full time and go out and exercise, but I can't. It makes me feel like I am letting myself down and others in my life. I feel like a burden, people in my life got stuck with me being sick.

  Looking forward is too hard, I get overwhelmed and sad thinking about my future, but looking back at my life is even harder. It's hard to think back when I was younger and my symptoms weren't as bad. I feel like I was a completely different person. The older and the worse I get the harder it is for me to remember who I used to be. I have found ways to grieve with losing who I was and I do try and find the positive side of having an incurable illness, but I am still human. I am strong but at times I am weak. Each day gets harder and my body grows weaker and gets more and more tired. 

  Be careful when you judge people, not all illnesses are visible and you never know the struggles people are going through daily. I do my best at living the life I was given. I am so grateful for so many things and I know that I have the strength to get through this.