The 2 Types of People You'll Encounter After a Diagnosis

606
606

When you first get sick, you will experience two different types of people. There are the ones who support you and understand. Then there are the ones who are always trying to heal you, discounting how you feel or getting frustrated when you are not getting better. Most of the time, those kinds of “friends” have no idea what you’re going through and they will try to ignore it. They think you can just turn on and off the ways your body affects you!

There will be ways you can tell the difference between these types of friends. The latter will usually ignore what you say about being sick and only hear what they want. They get upset with you when you have to cancel, and worst of all they try to make you feel guilty for being sick! I have not figured out yet if it is because they can’t deal or if it is because they are tired of hearing it. But when you have to cancel for the twentieth time, you feel like you need to give an explanation. Then you either get ignored or worse: they ignore what you’re saying and think only of themselves, replying with something made to guilt you!

The friends you have who are supportive will still invite you out and try to include you; however when you can’t make it, they understand and they do not throw a fit. They say, “I get it” and “I hope you feel better!” When you get sick you never want to accept an invite or commit to anything because, to be honest, I can’t tell you from hour to hour how I’ll feel – and that goes for many of us with chronic illness. You may feel like if you do accept that invite then you are just going to inconvenience someone else because you know your body and what your limits are. However, you have to also deal with those that don’t get that and get upset when you say you can’t go because you know your limits.

What I don’t think generally “healthy” people understand is that I would love a night out. I would love to throw all of my pain away and have a brand new body and stomach! I would have drinks and just dance, dance, dance. However, the reality for me is if I do that then I will be very sick and could hurt myself very badly. Having Ehlers-Danlos syndrome (EDS) and being in that kind of environment means I run the risk of dislocations. I’d have the pain alone to deal with, plus the issue of what the bathroom situation is if I get sick. My condition is serious and I even have alcohol intolerance. Plus, my spine puts me in a living hell, so sitting in a bar or standing in a room are things I cannot do! And there are probably 20 other things I could think of to add.

When you are sick you have to think about so many more things that most people do not have to deal with. And most of the time I don’t go out because I worry, what if…? I would do anything to go back to the days before, but I (and many others) can’t. So please, still invite us but if we can’t make it, please don’t make us feel worse. We can also modify to accommodate our bodies. I would love to have a pajama party with you at home instead of going to the bar!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via lorenzoantonucci.

606
606
TOPICS
JOIN THE CONVERSATION

Dealing With Seasonal Sickness as a Person With Ehlers-Danlos Syndrome

189
189

I am sick. Specifically, I have a cold. I’ve had it for about a week now, with no end in sight. It’s the type where I almost completely lost my voice, am hacking up copious amounts of phlegm, and should probably just have my paycheck direct deposited at CVS due to the incredible amounts of cold medicine I’m purchasing.

I am also ill. Specifically, I have Ehlers-Danlos syndrome hypermobility type, mast cell activation syndrome, and Chiari malformation. Because of my chronic invisible illness conditions, having a cold isn’t just having a cold. The Mighty has an excellent video about the difference between someone who is sick and someone who is chronically ill. Watch it here. It’s even more complex — and the difference even more glaring — when someone who is chronically ill gets sick.

Take the fatigue. Both of my chronic illnesses come with the fun side effect of often crushing fatigue. I’m slowly learning tricks of how to manage it, through good diet and nutritional supplements. Doesn’t take away my fatigue, but does make it manageable.

But I get a cold, and all the good from that management goes out the window. All my body wants to do is rest — not just the normal rest it always craves, but on top of that, rest to try and fight off this cold. I am double exhausted.

But I can’t just sleep all the time. I am determined to be stronger than my chronic illness (while still taking the necessary self care steps so I can triumph over it long term: a really hard balance!). Have you seen the DayQuil “No Such Thing as a Sick Day” ads, where the mom or dad walks into their baby’s room and tells the baby they’re taking a sick day? Tagline: “Moms/dads don’t take sick days.”

Well, that’s just it: I am a mom, and want to be as present as possible in my daughter’s life. I’m also a working mom. My job is more than just a job to me: it is my calling, my passion, and so I am dedicated to showing up there, even on the hard days (as long as I’m not super contagious!). So what happens is that my life becomes sleep, medicate, work, kid, medicate, sleep. There is no time or energy for anything else. We are talking full-on survival mode.

And then there’s the pain. Oh, the pain.

Because of my faulty collagen, I often get chest wall pain and inflammation, also called costochondritis. Now I have a cold that almost immediately moved into my chest. But it’s not just those two pains on top of each other, because the cold actually makes the inflammation and chest wall pain itself worse, so it’s double that pain plus a distinctive pain from the cold.

It also means I seem to injure a lot easier. My legs and hips have even more bruises than normal from things as simple as playing with my daughter. I feel so fragile. And subluxations happen a lot easier too. I subluxed both my shoulder and one of my hips this weekend, even though I was in bed for much of it!

All of this leads to the painsomnia: insomnia caused by pain. I’m exhausted (see above), but can’t sleep because of the pain. What a vicious cycle!

It also seems to take forever for me to get better. When my husband and I get the same cold, his is done in half the time and is much less severe — but he is not chronically ill.

Eventually, even though it doesn’t seem like it here in the thick of it, my cold will go away. My chronic illnesses, however, are here to stay. This reality can be very hard for me to think about sometimes.

The positive side is part of what I’m feeling will definitely get better. The cold going away means I’ll return to the “normal” of my regular chronic illness management. I won’t just be in survival mode. I’ll still have fatigue, but lesser. I’ll feel more like thriving than surviving.

But… there’s also always the reality that I will never get fully, or really even more than half, better. The cold will leave, but chronic illness is here to stay.

I am lucky, though. I have other things that won’t go away like seasonal sickness: namely, an incredible support system. My husband is my rock. He takes on extra daily just with my chronic illness, and so much more when I’m sick on top of it. I try to express my gratefulness as much as I can. I have amazing family and friends, both near and far. I have people I can always complain to who always are empathetic and here for me. I know many do not have this kind of support system, and I try my best never to take it for granted.

I also have a job I love. When I am there, I don’t feel sick most of the time, because I am in my element, doing work I am passionate about. And I also have my daughter. She brings so much sunshine to my life, and I wouldn’t trade getting to be her mama for anything.

So is being chronically ill and seasonally sick at the same time a very significant challenge on my life? You bet it is! At the same time, I know that I have a strong support system, hot tea, a great job, a beautiful daughter, and my faith that keep me pressing through daily — even on those “survival mode” days.

This blog was originally published on Writer Kat.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by cyano66

189
189
TOPICS
JOIN THE CONVERSATION
Woman holding her face in her hands

When Anger Is a Hidden Symptom of Ehlers-Danlos Syndrome

3k
3k

When people ask me what I have done to hurt myself I want to make up some really cool story to tell them instead of the truth. The truth is that I hurt myself by just sleeping wrong, by reaching up in the cupboard to get a cup, by braiding my hair, etc. I hurt myself daily because Ehlers-Danlos syndrome means that my joints are weak and pop out of their own volition. Sometimes I hurt myself worse than others. I have already had three surgeries on my shoulders (two on my right, one on my left) to repair and stabilize them from previous times I moved the wrong way, in fact the last surgery I had for this was in July of 2016. It hasn’t even been a year and I have hurt myself seriously again, this time my left shoulder. As I am writing this I am in excruciating pain, pain that is a step above the pain I feel on a daily basis. I have a high pain tolerance, but when I injure myself like this the pain becomes nearly unbearable.

I am writing this because it honestly makes me so angry. I am angry at my own body for being so fragile and I am angry with life for dealing me these horrible cards. The anger I have boils inside me because I do not have anything to direct it at. The pain brings me to tears, but so does this rage I feel. I am tired of having to go through things like this, of having to see doctors and of having surgery. I am tired of the doctors always being baffled, of looking at me like I am a complete mystery. I am only 25 years old, but Ehlers-Danlos syndrome makes me feel like I have lived a long, agonizing life already and when I think of the pain I will feel in years to come a new anger and dread fills my head. I know I am not the only one who feels this way, I know that there are many other people with various chronic illnesses who are as angry and upset as I am.

When I feel this way I know that I often direct my anger towards those I love the most. I become irritable and yell at people (or my pets) when they didn’t do anything wrong, but sometimes I just can’t take the pain. What do I do with this rage, how do I blow off steam before I explode in a fury of tears and unwarranted cursing? For me I write. When I feel like this I grab a pen and paper and pour all of these horrible feelings onto the page. I write poetry that tells the world how I feel and what it is like living with a chronic illness. I also paint or do other creative activities. I find that this is the best way for me to blow off some of this steam. It is different for everyone, but I truly hope that everyone who feels the way I do right now can find an activity or hobby that can help them to deal with the floating anger that comes with chronic illness.

I write this now because I want to get some anger out of my system, but I also write because I want other people who don’t have a chronic illness, people whose bodies don’t fail them, to understand what it is like for those of us who deal with this type of anger and pain day in and day out. I write this because maybe someone has a loved one with a chronic illness, perhaps Ehlers-Danlos syndrome, who is going through this despair and they do not quite grasp the situation. It is my hope that maybe by reading this they can begin to understand.

I think the best thing to do for someone who feels this type of anger is to let them express it and maybe help them find a viable way for them to blow off some steam. It is also important to understand that when we sound irritable towards someone or yell or curse, it likely has nothing to do with them and everything to do with they desperation we are feeling. So although it might not be pleasant to be around someone who feels the way I do right now, it is important not to take anything that is said personally. We need our loved ones to be the solid ground in the middle of an ocean of rage and pain.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by grinvalds

3k
3k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

My Search for Acceptance as a College Student With Ehlers-Danlos Syndrome

96
96

I have Ehlers-Danlos syndrome. My parents thought it would be good for me to live on campus my freshman year, to gain that college experience. And for the most part, I agreed with them. My biggest concern was either finding a roommate who would understand my situation, or not having a roommate at all. My problem was that my university was very persistent about me needing to have a roommate. I wasn’t in a wheelchair, so they thought I must be able to live with someone just fine. They were wrong.

I don’t blame my roommate for the problems that arose. I wouldn’t necessarily wish living with someone with my condition on those who aren’t loved ones and voluntarily choose to do so. But there are days when I need 12 hours of sleep. I was never given that. There were days when I couldn’t stand loud noises, but she had to dry her hair. And there were days when all lights bothered me, but she needed lights on to see and do homework. You can’t always get needs met when you live in a 15 by 20 foot room with another person. We lasted one semester until it was proven that having my own room was best for my health.

Even putting the roommate situation aside, campus living was hard. There were days I could barely walk 10 feet, but needed to walk half a mile to get to class or to even get food. So many “friends” would call me lazy for driving from my dorm to the academic buildings. They just didn’t understand why. The few friends I made at freshman orientation started to dwindle because I never wanted to go out.

“Going out” consisted of going to the apartments to drink and party until 4 o’clock in the morning. Even if I wanted to go and not drink, I couldn’t; the smell of alcohol makes me nauseous. And the more opportunities I missed out on, the less people continued to try to include me. I was at a point where if I wanted to get lunch with my group of friends, I had to invite myself along.

There are some upsides, though. I found one friend who completely understood. She was happily content to just sit and watch TV with me on a Friday night. She loved that I went to bed at 8 p.m. because it gave her an excuse to also. It took me a long time to find her. She was the first person who entered my life post-diagnosis I finally felt accepted by. She gave me hope that people will understand and still love you for who you are, even if they have only known you a short time.

We want to hear your story. Become a Mighty contributor here.

 

96
96
JOIN THE CONVERSATION

A Day With Ehlers-Danlos Syndrome

607
607

I recently started my 5th or 6th round of physical therapy in an attempt to manage my Ehlers-Danlos syndrome (EDS). My therapist is very knowledgable about the condition, and he often talks to me with real-life and human perspective as he pushes and pulls on me during the manual manipulation portion of my treatment. This past Wednesday, he said something that just rung so true for me, “Em, you’re just made with some extra rubber.” He said it sarcastically because it’s not a perfect metaphor, but it got me thinking about my average day as a person made with extra rubber.

It’s 6:00 A.M. The alarm on my iPhone quietly sings, and milliseconds later my wrist starts to buzz from the second alarm I have set on my Fitbit. I turn off the Fitbit, and hit the snooze button on my phone. I’m not ready to get out of bed – I never am. It’s not because I didn’t get enough sleep the night before, rather I need to do a quick body assessment. “What hurts?” I ask myself. Today, it’s my knees, right ankle, and right elbow. I give by body a baby stretch and sit up. My snoozing alarm has 3:30 minutes left. I turn it off and start moving to get out of bed.

Click-pop click-pop. The sound that echos through my pitch black bedroom as I slowly swing each leg over the side of my bed. It’s my hips. It didn’t hurt, I’m safe. My knees make that same hollow noise as I press my feet into the carpet. That hurt, I need my brace. I shuffle across my dark room, avoiding turning on lights to let my husband get 50 more minutes of zzz’s. I find my knee brace. It goes on under my pre-picked jeans so none of the ladies I work with ask questions. I finish getting dressed in the outfit I’ve laid out the night before and head to the bathroom, the clock reads 6:10 A.M.

I think to myself, “You have 14 minutes,” the amount of time until I absolutely have to be out of the door. The 24 minutes I give myself each morning to get ready to ensure I’m not exhausted by the time I get to work. I stand in front of the mirror. My hair is a mess. I brush it and it still looks terrible, so ponytail it is. I can’t bare to hold my arm up to bother with a straightener. The two minutes I take to brush my teeth seems like an eternity.

I’m finally done. I brave the steps downstairs and hook the dog up on his lead. It’s cold in the garage. I need to start my car. I have 8 minutes. I walk out front and let the freezing Pennsylvania air hit my coatless and shoeless body. For 30 seconds I feel like a million bucks, any longer and it would start to be painful. I come back in the house and start my makeup. I quickly swipe foundation and blush across my face, and add the tiniest amount of eyeliner. When I’m exhausted at 1:00pm and my eyes start to burn, anything more wouldn’t be pretty. 5 minutes. I bring the dog back in. He races back upstairs to join my husband in bed. I slowly climb the steps like I’m climbing Mount Everest. That handrail is my best friend. I shut my two love bugs in the bedroom and head back downstairs to put my shoes on.

Sneakers. It’s always sneakers. Not just because I walk a lot at work, but because I need the stability. 2 minutes. I put my office keys in my pants pocket, put my coat on, check to make sure my elbow sleeve is in my purse, grab my coffee that I set to perk the night before and head to my car.

It’s 6:24 A.M. I move my seat to make sure my leg comfortably will move from petal to petal with my knee brace on. I hit preset station number five, The Preston and Steve Morning Show, and I pull out of my drive way for my 11 minute commute to work.

It’s 6:35 A.M. I walk into my building and head straight to my office. I can’t clock in until 6:45 A.M., but I need to be able to sit before my staff start arriving at 6:50 A.M. I log in to my computer, check my email and grab the weeks schedule all while standing – don’t want to trick my body into thinking it’s getting a break. I change the assignment sheet as needed and check the toiletry supply in my office – still standing. I can finally clock in and sit down for at least 5 minutes.

My staff start trickling in. They need wipes, pull ups and laundry detergent. My right leg follows the rest of my body around the building for 6,000 steps simply because it has no other choice. The pain is numbing and I feel like I am falling apart at the seams. I won’t sit down again until the last of my ladies gets on the bus around 9:30 A.M.

The next three hours is paper-pushing and computer work. I find solace for my body. Reenergized for the second half of my day, I barely make it to 3:00 P.M. I clock out, and go home.

As soon as I can get the dog back inside I’m laying down on the couch. Before I can even get a pillow under my knees I’m asleep. The next sound I hear is my husband walking through the door at 6:00 P.M. I’m groggy and I’ve lost 2.5 hours, but my body needed the rest. My physical therapist tells me that until I’m strong enough my body is using twice as much energy to do everything. It is in this moment that I believe him.

My husband makes dinner because he’s a saint. Maybe I’ll have the energy to do it tomorrow. Who knows?

It’s 8:00pm. I tell my husband that I’m going to take a shower. He says, “Goodnight!” because he knows that it’s my way of telling him I’m exhausted and I won’t be back downstairs. I climb Everest and take a quick shower – too long in there and I’ll feel like I’m becoming a puddle. I slide into pajamas and settle into my jersey cotton sheets. It’s a relief on every joint. Euphoric enough that I’m not even thinking about doing it all over again the next day.

607
607
TOPICS
JOIN THE CONVERSATION

When My GP's Office Told Me, 'You're Costing Us a Lot of Money'

10
10

After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist Ehlers-Danlos syndrome team, I have come up against yet another wall.

Stanmore is one of the top places in the country for patients with Ehlers-Danlos syndrome. They have a team full of specialists who unusually know about and manage those with EDS. Their books have been closed for years, and finally the doors have been opened for new patients, all of us in dire need of a team that understand and cater to our needs.

Last year, after six months of pushing and a formal complaint, I had a referral sent through at the request of my cardiologist. Unfortunately as my GP surgery had refused to send the referral, by the time it was sent out they, too, had books too full to take new patients. I knew there was a reason behind my referrals not being sent out, but at the time the GP appeared to be doing this out of complacency rather then anything else.

This week I called up Stanmore to find out the status of my referral when they told me it now has to come from a local rheumatologist rather then the surgery. I knew this could be an issue, but wasn’t quite expecting to hear the reasons behind this.

I called up the surgery and explained my situation. The reaction was a flat-out no to a local referral, followed swiftly with an angry, “You’re costing us a lot of money.”

Yes, that’s right — never mind the fact that I am a patient with the same rights for help as any other chronically ill person on their books — this entire continual struggle is fueled by the surgery having me down as either a patient not worthy of help, or a patient who is too costly to bother with.

This type of comment seems totally unacceptable to me. Regardless of the cost behind treatment and referrals, it is not a comment to fling at a patient who is sick. Within the EDS community it seems this is not an uncommon thing.

This illness that effects our every moment has a hugely detrimental effect on us. It can steal away our ability to move about safely, it causes great pain and often leads to a point where we are physically unable to work. It can steal our ability to eat normally, to sleep normally, to function socially or function at all. It can cause heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that many of us become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are lifelong.

We may not be dying, but living with EDS that is not being managed intrudes our lives. It can feel like every shred of our being is slowly stripped away — and all of this without the support of the medical profession. Why is it that this is OK? Money should not come into this when a person’s life could be totally turned around with the right input.

I am exhausted from fighting the system. I have bitten the bullet in the past and gone privately for help, but unfortunately living on benefits doesn’t leave you with a lot to spare, and Stanmore won’t accept a private referral for their services anyhow. I do not need this continual fight on my hands when I am already sick, in pain and exhausted, yet I have no option but to carry on pushing hard if I want this referral badly enough, and I do. I want the chance to function again, to live again and to work again. I want the opportunity to learn how to self-manage effectively and understand how to cope with my illness. I want a life. This is all very difficult to remember when you are continually written off by those who should be supporting your needs. It is a very damaging way to treat a patient, and really does beg the question: Why am I so unworthy?

I feel lucky that I am mentally stronger than ever before. I can just about cope with this – it is healthily getting turned into anger rather then self-hatred, but two years ago this would have had me on my knees and added fuel to the fire of depression, anxiety and PTSD. It scares me that there are so many others out there dealing with the same comments who may not cope with them so well.

It is not acceptable.

Follow this journey on Life on the Stripy Side

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images

10
10
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.