Walking the Line Between Asking for Help and Feeling Like a Burden

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You don’t have to be chronically ill to appreciate how difficult it can be to ask for help. It can quite often be less stressful to tough out your problems alone than to ask for assistance, even if you know it will make everything easier. This is often because relying on others can make you feel like you are annoying them.

So what happens when your life is only able to be lived with the help of others? A mental battle occurs.

This is a battle in your mind between needing to ask for help, but being afraid that you are becoming too much of a burden on others when you do ask. Which can leave us feeling hopeless or put us in a position of extreme anxiousness and uncertainty. More often than not, the people we go to for help are also the people whom we love, trust and who make us feel safe. And the thought of annoying these people is completely and utterly terrifying.

 

So then there becomes a never-ending cycle in our minds and it goes something like this:

We want to ask for help. No, sorry, let me rephrase that: we need to ask for help.

We want to ask those we trust to help us.

We worry we are becoming a burden on them.

We then fear we will become so annoying they will leave us.

The thought of losing said person is heartbreaking.

So now we feel like we cannot possibly reach out to them for assistance.

We then feel lost and alone.

And remember how I said we needed help? That still applies, meaning we are left in what feels like an eternal black hole.

This continues over and over again with each person until you feel like there is no one left you can turn to without pushing them away.

To feel like you are a burden to those you love is devastating and quite possibly one of the hardest parts of living with chronic illness and chronic pain. I am constantly asking questions: How much is too much to ask? When will this person become sick of me? Does this person really want to help or is it because they pity me? Who will be there for me if this person leaves? When is too soon to ask for help again?

I am fully aware that my Ehlers-Danlos syndrome makes me less fun than what I was before my joints kept falling apart and before I was living with constant pain. I know I am no longer the friend who can always be at every event or the friend who you can always rely on to be there for you. But this knowledge makes it ever more difficult to ask friends to help you because you already feel like they must be getting sick of waiting around or changing plans for you. And believe me, the last thing we need is to feel alone.

So that leaves me back in a place of uncertainty. It puts me right back at the start, where I feel like I cannot reach out for the help I require.

I have experienced a lot of hurt throughout my journey, but I can safely say I will never be as hurt as the times when someone in my support network begins to pull away. Whether it’s the time I was told I was “being difficult” when I had to ask for plans to be changed to accommodate my needs or when I asked my teacher (who I trusted more than anyone and who had been with me through everything and was the only person who made me feel like I could successfully make it through school) if he had time to do a quick favor for me and he replied with “I’m always busy but that doesn’t seem to matter.”

Whether it’s the people who reply with “Why can’t you do it yourself?” when you ask for help with a seemingly simple task or rolling of the eyes or the tone people use regardless of the nice things they say. It’s all this that makes me feel like I am nothing but a burden on those around me. Hence, I am having to constantly walk the tightrope between receiving the help I need and fearing that everyone I love is becoming sick of me.

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Thinkstock photo via GPitman.

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To the School Staff Who Dismissed My Ehlers-Danlos Syndrome

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Just because you cannot see my disability does not mean it isn’t there. About four weeks ago I was diagnosed with hypermobile Ehlers-Danlos syndrome. My family and I informed the school nurse and staff, even turning in documentation from my specialist. Despite all the evidence given, my school still does not seem to believe me.

My thumb dislocated last week in math class. When I informed the teachers, they said, “OK.” 10 minutes later, when I saw nothing being done, I asked for ice and if the nurse could be called. They brought me ice and proceeded to ignore me. I decided to talk to my friends. They were sitting with me when the dislocation happened and saw as my thumb started to bruise, turn red and swell up. At break I texted my dad to let him know my thumb had dislocated. Normally my joints just sublux, so I knew it was important to let my parents know.

 

30 minutes later I was informed that the nurse said I was fine and I just needed to “stop playing with my fingers,” then proceeded to be sent to the back room. I still do not understand how she knew I was “fine” without ever seeing or talking to me. The staff told me I had to go to the back room because if things are dislocating they need to be able to keep an eye on me. They then told me I was talking about my condition too much, causing concern and being a distraction, so I had to be in the back room so others could learn. My dad eventually decided to come pick me up from school which I was reprimanded for because we didn’t follow protocol. I was “fine,” so I should not have had to leave.

The next day the school psychologist talked to me. I will never be able to forget the cruelty I faced in her office that morning. I was told I needed to stop “celebrating and flaunting” my disability. That they could see me trying to become my illness and seeking attention. She stressed how hard it is to believe I am in pain when at break I can be seen talking and laughing with my friends. “If you are in so much pain, wouldn’t you want to stay inside and rest? It just doesn’t make sense.” Despite explaining that distracting myself with my friends is exactly what my specialists want me to do, it was not a good enough answer. I was told it is hard for staff to believe me when the nurse is the expert and says I am fine. I tried explaining that EDS is a rare disease and I do not think the nurse really understands, but was assured the nurse sent an online article to all the staff so they do understand. I was just snubbed no matter what I said.

I wish the school staff could understand that this diagnosis is new to me, but it is part of my life now. As the doctors are checking for more things, new problems are arising. I am not “becoming my illness” or “seeking attention,” I am talking to my friends because they want to know what is going on. Just because you only decide to hear us talk about my illness does not mean the majority of our conversations aren’t about crushes, hanging out and books. You are only looking to see what I am doing wrong and you are missing me doing my best to be a normal teenager.

I am trying my hardest to be a normal senior.

I went to Senior Ball, Senior Picnic and am anxiously awaiting graduation. I know my EDS, CRPS and other medical issues do not define me. You are the ones who do not see that. I hope you can show more compassion to kids with chronic illness in the future. I may be graduating, but no child deserves to be treated how I was. My disability may be invisible, but it is with me every day. Please change your ways because teachers of all people should know words hurt just as much as punches.

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I Am Bitter About My Illness Today, and That's OK

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Here’s the thing about chronic illnesses: you can’t ignore them, but you can’t let them consume you. It’s hard to find the balance between pretending you’re not sick (and not taking care of yourself) and thinking all you are is your illness.

In the past, I’ve tried to find a daily balance between accepting my limitations and still doing everything in my power to lead a “normal” life. Sometimes though, my health doesn’t allow me to do much of anything to lead that faux-healthy life.

 

Lately, I’ve been pushing through the dislocations from my EDS and the fainting spells from my POTS to keep up with life, but today I just can’t keep up. I feel so defeated and sorry for myself. Yet I am angry and bitter with myself for even feeling that way.

This is something I struggle with from time to time, but I now remember something someone once told me – I need to let myself feel my emotions. Let them wash over me, without consuming me. So here I am, acknowledging that I am bitter today and that’s OK.

Tomorrow is a new day.

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Thinkstock photo via ChooStudio.

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What Physiotherapy Is Like When You Fear Pain

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Physiotherapy has always been a bit of a contentious issue for many people with hypermobile Ehlers-Danlos syndrome (hEDS). Most of us struggle to find a consultant with enough knowledge to treat us effectively, let alone a physio.

In all the years I’ve seen physiotherapists (approaching 20 years now), I’ve seen so many I’ve lost count. I’m sure my words will be echoed by my fellow hEDS brothers and sisters, being told things such as “Of course it will hurt” or, on hearing the exercises given cause such pain, “Well, I don’t think we can help you then.”

It goes without saying that there’s been disbelief from them at times too. How can a few extremely small exercises cause so much pain and fatigue? And at that point, I normally switch off – I can no longer trust that physio with my body. In fact, it caused almost a revolt in me. I felt I had to fight to be “normal,” which of course has caused massively significant issues…

 

hEDS is caused by an alteration in the collagen gene – the glue that holds most of our body together. You know when the elastic on your underwear “goes” and they slip, fall down and you have to keep pulling them back up? Well, that stretched, worn out, fragile elastic is akin to my ligaments. Meaning the only hope a person with hEDS has got is to hold our joints in, to keep our muscles as strong as we can.

Sounds simple, you say? I cannot tell you how much harder our bodies have to work. This comes along with pain, fatigue, subluxations – did I mention the constant pain?

Especially with so many bad experiences under my belt, starting sessions with a new physio invokes extreme anxiety. I have to place an enormous amount of trust in someone I’ve only just met, knowing the chances are they probably can’t help, and may even make things worse.

I got thinking about how much mental strength this took, and suddenly it made me look at the situation differently. What an attribute to have, to maintain strength in the face of adversity.

This further took my thoughts to perseverance. Despite the negative experiences, I have persevered over the years and have eventually found a physio who knows at least as much as I do, if not more about hEDS. Jackpot!

Roll on to today, and I have a new physio regime to complete every day. It takes at least 45 minutes at the moment (and it’s early days still). I have to split this into two, and often sleep for a few hours in between.

A few days in and I hurt – and in new places too. I’ve also realized this new routine has to be for life. As as soon as the physio stops, so does the muscle strength. It seems like a hell of a commitment. It’s going to take six to nine months to be able to even tell if it’s helping my shoulder, which in January was subluxing more than 10 times a day.

woman walking with an assistive device

This time, the whole experience feels different though. I trust my physio. That is amazing in itself. I’ve found out things about my body I never knew before, especially regarding my topsy turvy muscle patterning.

We set a goal too, which has helped more than anything else(!): to aim for a time when I can do my bra up without my shoulder slipping out. Something that’s so easy to take for granted.

It’s still hard to beat the anxiety of completing the exercises every day when you are unsure how you’re going to wake up each morning (I injure myself most in my sleep). It’s so hard to then push through the pain. I can’t even really describe the fear – it can be all-consuming. Thinking about the fear made me also realize how much that takes, mentally – how many people have to face up to one of their biggest fears daily?

And that is when this quote popped into my head:

“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.” – Christopher Reeve

I first read that a few months ago in a Buddy Box I received from The Blurt Foundation and it has stuck with me since.

I would like it to stay with you too, as a reminder of the strength and perseverance it takes even to complete “simple” exercises when you live in constant pain. We are all heroes in our own way, disability or not.

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When People Think 'I Can't' Means 'I Won't,' and Why They're Right

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I have an invisible illness (well, not “an” invisible illness – I have what feels like a million invisible illnesses). I would like to begin by explaining in some detail what these illnesses do to my body that you cannot see.

I have the hypermobility type of Ehlers-Danlos syndrome (hEDS). EDS is a genetic connective tissue disease that affects the production of collagen in the body.

What this means for me is daily dislocations of multiple joints and many more subluxations (subluxations are when a joint starts to slip out of place but doesn’t fully dislocate). No, I am not being dramatic. I and many other “zebras” with hEDS go about our days in constant pain from joints that slip and slide all over the place from the simplest of movements. If I’m not careful I can dislocate my shoulder just drying off after showering. By the end of every day my right kneecap has slipped so far out of alignment that I have to pop it back into place. My jaw subluxes nearly every time I eat. And my ribs move around so much that they often slide up on top of each other depending on how I’m sitting. Not to mention how frequently various tendons and ligaments slip out of place! So that’s one disease…

I also have postural orthostatic tachycardia syndrome (POTS), which makes me feel as though I’m going to pass out anytime I stand; chronic obstructive pulmonary disorder (COPD), which causes me to feel as though I’m suffocating after something as simple as walking up the stairs (yeah, I’m 24 and have never smoked – nobody can explain why I have this); fibromyalgia, which makes me feel like a giant bruise every time someone touches me; and some extremely elusive systemic autoimmune disease that nobody has been able to “officially” diagnose (sometimes it looks like lupus, then maybe scleroderma, and back and forth for about six years!), which, even though I can’t name it, still comes with all the constant pain, relentless fatigue and an agglomeration of other symptoms. I could honestly go on for another four or five lines, but those are the biggies.

No, I don’t have a walker or cane (yet). No, I am not wheelchair-bound (yet), although I do use a wheelchair at times when going places that require a great deal of walking. The only things an untrained observer may notice would be my pain patch that delivers my pain medication that’s sometimes visible on my arm, the ever-present dark circles under my eyes or the clattering of the pills in my mobile pharmacy, a.k.a. my purse.

So when I say I can’t do something people are often flummoxed, and they unfortunately can get a bit judgmental. For example, I’ve heard stories about people genuinely getting mad when someone with a chronic invisible illness says they can’t walk a long distance because “they’re not in a wheelchair so they can do it.” These people accuse us of being lazy; “you can, you just won’t” or “you just don’t want to.”

You know what, they’re right about one thing in my case, and it seems to be something that confuses everyone: I can still do stuff. A lot of stuff! I am still physically capable of forcing my body to do a lot of things. But you’re darn right I won’t because here’s the thing: doing stuff usually hurts me. Pretty simple, right? And I think it makes a lot of sense, so I’m not really sure why I still get so much harassment when I explain this to people! But this distinction between can’t and won’t seems to be a big point of misunderstanding between people who are chronically ill and people who aren’t.

Pain is by definition bad, negative, the opposite of pleasure, something to avoid – so even if I am still physically capable of doing something, if it hurts me during or causes me extra pain afterwards, I’m not going to do it. I won’t. It’s not being lazy, it’s protecting myself. I don’t understand the jump made from I won’t to I’m lazy. Heck yeah, you’re right – I don’t want to do something that’s going to cause me increased levels of my already constant chronic pain, and I don’t deserve to be judged for that!

This has even been an issue in my experiences with doctors. They’ll look at me and see that I’m flexible and that my joints move well (move too well – thanks EDS), and assume that because my joints aren’t completely arthritic that I can physically do things, so there’s no problem. They miss the entire reason I’m there! I’m well aware I can do things, but it hurts when I do them and that’s not normal!

Also, just because I can walk doesn’t mean I can walk any distance. Just because a healthy person can run doesn’t mean they can run a marathon at any given time, and it would sound ridiculous for someone to ask that of them. So why do we make these assumptions and treat sick people like they’re criminals for standing up for themselves and for trying to avoid pain?

People get confused because I work (part-time) and I went to school and I spend time with my friends and my family. People see me doing an activity or getting out of the house and, sure, this implies capability, but they know absolutely nothing about the consequences. Here’s what they didn’t see: they didn’t see me have to nap after showering. They didn’t see me throw up then still leave and go to work (side effects – not contagious!). They didn’t see me make my mom stop at school to turn in a paper on the way to the emergency room. They didn’t see my parents have to basically coerce me into taking time off from work when I started taking a chemotherapy drug because I was too stubborn to. They didn’t see any of that and they don’t see any of the pain from any of the joint dislocations or any of the other symptoms. What they’ll see is a composed, smiling, normal-looking girl. And I like it that way. People don’t want to be around someone who’s constantly depressed, whining, crying and negative. I know that. That’s why I don’t let you see those moments of pain (unless it’s absolutely unbearable or I really trust you). Yet they still choose to sit here and judge me.

I’m going to tell all the healthy people a secret: we live every minute of every day in pain at levels you couldn’t even imagine. We could complain a lot more than we do. A lot more. We could say “I can’t” a lot more than we do. Heck, we probably should say “I can’t” a lot more than we do! I dislocate my joints and pop them back in like nothing happened multiple times each day, whereas you’d likely be in the emergency room. Not to mention all of the other pain and symptoms from all of my other conditions. And most of the time we’re still expected to function like you do. I’m not saying this makes you weak by any means or something like that. Pain like this should not be a normal part of anyone’s life. Nobody should ever be expected to get used to something like this, but unfortunately that’s where medical care for chronic illness is at this point in time.

But if we finally put our foot down and say we can’t do something (or that we won’t), please don’t try to tell us what we can and cannot do. It should be obvious that you don’t know what causes us pain because you’re not in our bodies, right? But apparently some people seem to think they know better than us. It’s not your place to judge and it never has been.

All we’re asking for is the same respect you give to healthy people or people with visible illnesses. It’s both a blessing and a curse to have an illness that isn’t normally visible. On good days, I can blend in and pass as a normal person. But this is disadvantageous at the same time, because one good day seems to indicate to people that I must be all better. They get really confused and sometimes really mean when I have another bad day. It just gets frustrating because if someone with cancer or another more well-known, more visible illness had a good day, healthy people would be ecstatic (obviously for good reason!), but would never make the assumption they were suddenly cured. And if they had a bad day the next day, they’d be distraught and supportive instead of defensive and downright rude.

But why does it suddenly become allowable to harass someone with an invisible illness like this? We’re still human beings and we’re sick as well. We already experience immeasurable pain every day. We certainly don’t need people passing judgment on us on top of everything else, especially when they have no idea what we’re going through! We deserve respect and kindness. It’s basic human decency.

So, yes, the people who think that me saying I can’t do something really means I won’t are actually right some of the time. But wanting to avoid pain is (in my mind) a most basic human desire, so I think my reasoning for saying I won’t do some things is pretty, well, reasonable! As someone with a chronic illness, I’ve found the distinction between saying “I can’t” and “I won’t” a finicky differentiation picked at by able-bodied people. I think saying I can’t do something that will hurt me is completely fair. If, while I may be physically capable of doing something, I will be caused great pain by doing it, I think saying “I can’t” rather than “I won’t” is appropriate. And when it comes down to it, what I can or cannot do isn’t really anyone else’s business in the first place.

It’s really not that complicated: just don’t be a jerk! Be kind to everyone and treat everyone with respect. That’s all I’m asking for! You never know what someone is going through that you can’t see, and the way you treat them may have a more lasting impact than you’ll ever know.

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Why I Believe Doctors Need to Be Better Educated on Ehlers-Danlos

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Ehlers-Danlos syndrome is a genetic illness that is widely considered to be rare. However, there are many of us that do not, in fact, consider the illness as rare as many may claim. Those of us who do not consider Ehlers-Danlos syndrome to be rare believe it is under-diagnosed due to the lack of awareness of the illness itself. Ehlers-Danlos syndrome is a condition where the collagen in the body is faulty, so anything having to do with collagen is fair game to the illness. You have collagen mainly in your skin, tendons and ligaments. Tendons hold your muscles to your bones and tendons hold your bones together. Your skin holds everything… just in general. Hah.

So why would I imply that doctors don’t care as much, or even if at all? It’s because of the word “rare.” What? Yes, hear me out… Now I know many of us who love the medical television shows believe there are doctors out there (like House) who deliberately seek out the rare illnesses. However, that is not the case in reality. I’ll take it back to the 1940s when Dr. Theodore Woodward originally said, “When you hear hoofbeats, think of horses, not zebras.” This is a phrase that, to my understanding, the majority of doctors in medical school are being taught. They are in the medical field with this mentality that not only should they “play it safe,” but the money is in the masses.

Because Ehlers-Danlos syndrome has been coined as rare, it is far more likely to be overlooked as opposed to being embraced as a potential diagnosis. Now, think of all the people you’ve met that consider themselves “double-jointed” or hypermobile – maybe you’ve seen these people doing weird party tricks with their body and they just brush it off as normal for some people. Think about the wide range of symptoms they may have but never considered linking these seemingly random symptoms. When you take the symptoms of Ehlers-Danlos apart, they seem benign or irrelevant. If you know what you’re looking for though, it could potentially save lives or, at the very least, increase quality of life.

I’m not saying everybody has Ehlers-Danlos syndrome, but we need to raise awareness to get an idea of just how rare it actually is. We cannot coin an illness as rare when there is little to no knowledge on it. So many people out there have hypermobility and if we could educate the masses, starting with the doctors, maybe then can we see the bigger picture and start getting sufficient treatment plans set in place as opposed to just throwing pills at the symptoms.

General doctors look at Ehlers-Danlos syndrome as a waste of time because they believe they may come across one or two cases in their lifetime of practice. It makes sense. Why would they go out of their way to learn about an illness when it’s not what the average person is likely to present symptoms of? It’s not practical, and I’m not mad. But in my small town I know of 10 people who have the illness, and I am not a popular person. I don’t go out seeking people similar to me. I just found them. They all had a legitimate diagnosis when I met them, and no one knew each other prior, meaning no one sought the diagnosis due to basic awareness. We all just knew there was something off about our bodies and we listened to what it was trying to tell us.

Other people may not know to do the same. Everybody comes from different situations and handles things differently. Some may grow up shoving their symptoms under the rug, or others may not realize that hypermobility is just a symptom of a whole illness, so they ignore it and end up paying for it for the rest of their lives. Without that basic knowledge and understanding, people might needlessly suffer. If you don’t know what to look for, you won’t know how to handle your own body.

Even with the knowledge and diagnosis, we still end up injuring ourselves and cause great trauma to our bodies simply from carrying out simple daily tasks. But without that knowledge, I personally don’t know where I’d be. People tend to expect a lot out of seemingly normal, able-bodied humans, be it helping a friend move, carrying in groceries, going to a theme park (which can actually cause paralysis for us) or even just goofing around. That which people don’t understand about invisible illness is intensified with Ehlers-Danlos syndrome, because it is an invisible illness that is invisible even in most of the medical field.

Which brings me to the last point I want to make:

So we’ve raised the awareness, now what? We educated everyone and that’s great – but what do we do with this information now?

Of course, aside from the obvious of wanting new treatment options and simply wanting doctors to not shy away from me because I have an illness that’s new to them, I want it so well known that we have schools screening for it. Again, I’ve had it brought up that this may not be practical, but if we focus only on hypermobility, then can we screen for it. The Beighton Scale is not rocket science. The Beighton Scale is a physical examination that literally anyone can perform on themselves to get an idea of whether they may be hypermobile or not. Using the Beighton Scale only, if we screened every school child when they hit mid-teenage years, 13 and up, for simple hypermobility, that means we could potentially cut down on school injuries by restricting physical stress in P.E. and send a notification to the student’s parents that their child displays signs of hypermobility and what that could potentially mean for their future well-being. In the notification, we could point them in the right direction of getting to the right doctors to evaluate the student’s  potential for an Ehlers-Danlos diagnosis.

This is just my attempt on raising awareness in my own way. I feel the need to speak on my experiences to truly connect with able-bodied people so that one day we can all sympathize with each other and our daily struggles. My Ehlers-Danlos people are real fighters. We are fighting daily to exist with an illness that hardly anyone even knows exists. We will always be the zebras.

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Thinkstock photo via TongRo Images Inc.

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