How the Medical System Fails People with Chronic Illness

Trigger Warning: Suicide awareness

 

I have many doctors appointments and medical tests on a regular basis, but I still manage to not get effective care from many of my healthcare providers. My chronic cough remains undiagnosed and not effectively treated. My allergy attacks are getting more frequent and leaving me breathless and drugged on allergy meds and asthma meds. I have multiple joint issues that are left untreated and am told they will get worse, but there is no solution for stopping the degeneration. Doctors tend to eventually turn me out their doors with no available solution.

Why?

Because I am “not bad enough yet” and there is very little focus on preventative medicine. When you are “bad enough,” they treat you with the next step of care, but until then you are not given effective care.

When you get diagnosed with a chronic illness or you suffer from chronic pain, you are constantly asked about your mental health. How are you coping? Are you able to get out of bed on a regular basis? Does it interrupt your daily life? etc. etc.

Every new doctor I see asks me these exact questions. If you aren’t coping, they go to the next step in their method of care and that step usually includes a drug program or risky injections or steroids to help get you out of bed and cope. If you are “coping,” you are considered “not bad enough yet” and continually told to self-manage your symptoms and try physio-guided exercise, diet changes, supplements, etc. All of these alternatives help in a small degree, but they fall short.

But how do you actually measure “not bad enough yet” for someone with chronic illness or pain, especially when they have lived with it their entire life like me?

I also have the experience of having cognitive behaviour therapy (CBT) tools to help me cope with pain on a daily basis and “push through” my bad days so I can do things like have a shower, make food, go to the bathroom.

Doctors for the most part lack the ability to understand chronic illness and pain. The pain scale is different for us. The ability to cope is different for us, especially if there is a background of CBT or other coping mechanisms. They often don’t understand that the fact that I am seeking help from and seeing every specialist means I am bad enough. I’ve lived with chronic illness long enough to cope with bad days and live with high pain even on “good days.” And if I try to help them understand, they often say something along the lines of “I don’t want to start you on narcotics yet” and they don’t offer an alternative.

I don’t have a perfect solution. I’m not an expert. I will say that not being accused of being a drug seeker would be a great start and listening to what is happening to the patient as well as understanding that I may be “coping” but I am not doing well. The more bad days I have, the less and less I will be able to cope. My “good days” are days most would consider terrible.

I’ve overcome depression and suicide attempts to really value my life and value my abilities. To let pain stop that enjoyment for me is too late in my opinion and if that is “bad enough” for the medical professionals, I shudder to think what other patients are falling through the cracks – patients without my coping mechanisms – because the medical system is failing.

There is no mystery that the rate of suicide in the chronic illness community is higher. I have lost a family member with chronic illness to suicide.

I am not at risk myself. I have a fantastic family and friend network that is there for me plus the coping mechanisms to help me through the dark days, but I am at risk of losing my ability to cope. I am losing my ability to work and earn income. I am losing my ability to do basic tasks. I am losing and doctors are not helping.

We need an overhaul of how chronic illness is assessed and diagnosed. We need a new scale of understanding how a patient is coping. We also need a better system in place that considers a comprehensive view of patient care and has all of our health care providers talking to one another. With that conversation, maybe a real healthcare plan could be drawn up and the patient could feel hope. We need more patient advocates in health care policy and administration. We need to not wait until a patient is “bad enough” and make sure they don’t get there.

I see the start of this change, but it can’t come quick enough. We’ve already lost so many chronic illness warriors. Let there be not one more.

 

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Chronic Illness and Reliability

I’m not reliable. I’m not present.

I have a chronic illness and have been very very sick in increasing ways the past two years. Last Spring, I was diagnosed with one rare disease, Ehlers-Danlos Syndrome, which is all about joint issues and chronic pain. I have had a chronic cough for 9 months now and it has led to an ER trip and most recently 2 horrible weeks off work due to illness. Doctors are still unsure what to make of this cough as tests keep coming back negative but I keep getting worse and worse and medication is not able to manage the issue. One more attack like last week will land me in the ER and on short term or even long term disability. A person cannot function with a cough that bad along with EDS. I literally dislocate from coughing. I also am at risk of a lot of complications from this cough that are potentially and additionally life threatening.

I’m not reliable because my illnesses are changeable. I could be well one day and unwell the next. Or, as has been the case more these days, unwell one day, but really really unwell the next.

You gain a new normal with this sort of issue. My 100% energy level is probably about 50% for you. My 10 on the pain scale is probably 20 for you. Probably as a result of this, I haven’t gone to the ER when I should. Chronic illness really changes your perspective on things. My reasoning last week was that I *could* walk to the bathroom so I must not be that bad, but in reality, I should have gone to the ER and any other person would have, because they struggled to get to the bathroom. Chronic illness also makes you feel like a bother to doctors as they struggle to diagnose your issues. You can also develop a fear of doctors, because they often treat you as if you are making up symptoms or must not be doing something correctly or are lying or exaggerating your symptoms. Often I get dismissed because of my weight and shamed into not taking my health seriously. Often I get dismissed by specialists because I don’t go into the ER and I make it to my appointments. It’s always always always a Catch 22 experience with chronic illness. Always.

I’m not reliable. I cannot be counted upon. Not in the ways that society defines Reliability and presence are so wrapped up in each other. If you are present at an event that you said you would show up at, you are reliable. I’ve struggled these days with even saying “yes” to anything, including events at my own home. I push for energy on good days. I push through pain and respiratory issues.

My “yes” has changed to “maybe.” Which is a “no” to so many people. An unreliable person. A person who isn’t present.

I deal with a lot of guilt on a daily basis because of this issue. I don’t feel like a present member of my community. I can’t participate in person. Events that have an online aspect rock my world because I know I can do them. I can take part from my home and not have to worry as much, because I can log into the laptop or on my smart phone. But if it includes talking or being present on camera, my enthusiasm differs. I don’t know if my cough will make it difficult to speak or not.

I don’t feel like a good blogger. My concept of good blogging used to be every couple of weeks at least with every week at best. But even with a selfie stick and indoor picture or mirror pictures, just taking pictures in the outfits I make is a lot of work for me these days. I haven’t been here for a month because my energy went toward planning and throwing a birthday party for my husband and then being horribly sick the past few weeks afterwards. I have made things. Several things actually, but I don’t have the energy to share except for a picture on IG here and there.

I don’t feel like a good pattern tester. I have had to drop out due to sickness. I’ve also informed the pattern designers that I tested fit and didn’t have time to thoroughly look over the instructions, but did follow them. I usually try to read through them several times.

I don’t feel like a good friend or a good family member. I miss shows. I miss birthday events. I miss occasions, like baby showers. I send mail more frequently these days, though, but sometimes that is slow to come, too. I may not call to wish you happy birthday, but a text message or FB message is what I can do.

I don’t feel like a good wife. I miss my husbands events. I barely see him on stage. I don’t feel as supportive as I wish I could be.

I am reliable. I am present.

It’s different from what most people want or society deems acceptable.

I live mostly online these days. If I like your post on any social platform, it means I am present. I am here. I care about you. I’m using a precious part of my energy to put it out toward you and say, “hey, I care.”

Most people would think that is nothing, but to me that is everything.

I’m available best by email (contact form), IG direct messages, and Facebook.

Diagnosis

Let’s start off with something happy. My garden is flourishing:

Today's scenes from my garden. Lovely flowers blooming. #gardening #flowers

A post shared by Andie W. (@sewprettyinpink) on

I got more flowers and the back planter is fixed, but not yet rid of the rogue tree in the planter. Once the tree is gone, I can dig out the roots and finally refill the planter. I think some more hostas and a shade-loving flowering bush or two would be awesome.

On to the not-so-happy…

I’ve been pretty transparent about my health issues on this blog and I wanted to update since I finally got diagnosed. I have ehlers-danlos syndrome hypermobility type. It’s a connective tissue disorder that presents with hypermobile joints, chronic pain, thin skin, (cigarette paper) widened thin skinned scars, frequent bruising, and poor wound healing. My connective tissue which keeps my joints in place sucks and doesn’t help keep my joints in place at all. This explains my frequent subluxations/dislocations (subluxation is where the joint goes back in on its own and dislocation is where you need to push it or pop it back into joint) and chronic pain, but no signs of arthritis or joint swelling. EDS is often misdiagnosed as fibromyalgia, but can also come with a diagnosis of fibromyalgia. My pain is from hyperextension of my joints and damage to the soft tissues, but ultimately doesn’t affect the bones except as a result of injuries from dislocations. The injuries can lead to arthritis, but EDS itself doesn’t cause it. I’m glad to finally have a diagnosis and have a plan for treatment. I may also have other associated disorders, but those diagnoses will come later.

I have to work with a Physical Therapist to build up my muscles to give more support to my limbs. Some of my joints need braces and splints in the meantime to at least give me more confidence while walking. I walk slowly because I’ve had my knees give out so often. I used to be a fast walker. While I currently walk 6-10km per weekday, it’s not really doing much when I can’t build up the cardio aspect by walking faster. It will be a tough road and I will have more injuries along it. I know the injuries are just part of EDS and I can work on more preventative measures, but there will be injuries.

At least now I know the words and doctors can stop telling me it’s in my head and that I just need to lose weight and all my issues will disappear! Oh, the magic of weight loss… GPs love telling people weight is the issue and not a symptom of bigger problems. It’s tough to loss weight when exercise literally dislocates your joints… 5ish years ago I was 60lbs lighter than now. I was walking 10-15km per day and doing an hour of cardio and yoga per day. I was supposed to be in the best shape ever and on the road to even better shape with a lighter weight, but it was really the start of all these problems. My hip started dislocating and then various other issues arose along with another major knee injury (I’ve injured one or both of my knees several times throughout my life). My quality of life since has gone down significantly and I’ve gained back 60lbs. Luckily, my diet is pretty balanced so I’ve stopped gaining weight and have found that the summer has helped increase my activity for me to lose a couple of pounds. I’m sure that the increased weight has contributed to my increased pain and joint dislocations, but I haven’t had proper medical care until this past year to support me in any weight loss. Now I have a different GP and a diagnosis, I know what I can do to help myself. Weight loss won’t be my focus at all, but it might be a result of all the work I need to do. Weight loss is the furthest thing in my brain right now. I’m not going to beat myself up for not losing anything like I would have years ago, but I will be upset if I don’t build muscle mass and start feeling better. I shouldn’t be pushing myself with high-impact workouts or cardio. I need physical therapy, aquafit, and some weight training with a PT that understands EDS. I need to stop the decline now before it gets worse.

You’ll see swimsuit sewing popping up in the next while. I’m joining a YMCA with a warmish pool very close to my house and am going to need a bunch of suits. Swimming really is the best exercise for me and luckily I am part mermaid. When I was younger, I spent hours in the water if my parents let me. I will have to start out small and work up to a daily regiment. I have to be very careful to not injure myself (which can even happen in the water because that’s how bendy my joints are…) and work closely with a PT on every exercise.

Part of me is really relieved about the diagnosis, because it’s a name finally and actually matches up with all of my symptoms including GI issues. Many specialists told me that I would likely be diagnosed with it so I was prepared for it in one way, but the other part of me is scared and worried about the risk of injury as the reality of EDS sets in. It doesn’t ever go away. I know braces/splints and building muscles will help build confidence for the movement my body needs, but it’s a scary diagnosis and often the extent of the injuries and chronic pain leave people disabled. I already feel like a lot of things are cut off to me and I’ve spent the past two years really cutting back on my social life, because I just can’t do what I used to be able to do. I can barely hold groceries or pick up a laundry basket without feeling a joint dislocate/sublux. Even putting on a bra can sometimes lead to a subluxation of a rib or my shoulder or even my thumb. My chronic pain keeps me up at night, makes me exhausted early, and even makes sitting out the couch difficult since my right hip is prone to subluxation in any position. Even sewing can be difficult. The positive thing is that it won’t get worse as I age. It gets worse with injury and complications associated with that. Working on injury prevention and muscle tissue will help more than anything else.

I still have a lot more to learn, but at least I have something to research instead of a bunch of symptoms. I’m grateful that I finally found a team of medical professionals that can help me. Mostly I am grateful for my husband. He takes care of me and is my biggest patient advocate. He carries the groceries and takes the laundry baskets down two flights to our laundry room. He makes sure I rest when I need it and reminds me to stop. As we approach our first year anniversary of marriage, I’m more grateful than ever that he is in my life. He’s truly a wonderful man. I’m also pretty transparent about my love for him. 😉

I’m trying to keep positive as I juggle the emotions associated with this diagnosis and plan out treatments with the professionals. It’s tough, though, and my sewing mojo has definitely decreased. I’m a bit depressed to be honest. I’ve struggled with it in the past and have felt it as my body declined. I find the plants help, which is why this post started with them. They give me something to focus on for care. I’m a nurturer so I feel better caring for others than focusing on myself. I miss my cat’s comfort for times like these. She would curl up with me in bed and purr like crazy when I felt sad or ill. My husband is a good cuddler and I don’t need to clean a litter box for him. Ha!

I’ve joined some support groups online lately and have found comfort in talking to other zebras:

why-the-zebra

Everything in life takes hard work and I’ve never been one to let that stop me. I’m strong.

My tomorrow will be better than today and not worse than yesterday.

Chronic Pain, Body Positivity, and Sewing

This is a little bit of a different entry for me, but I have been having a lot of thoughts about these three things and how they fit into my life. I thought I would write about them.

I’ve spoken before about how body positivity and sewing go together.  Sewing helps me become a more body positive person and helps ,e break free of the number on the tag and fit for an actual body. I’m able to look beyond my fat to enjoy my style and become the confident person I should be.

Chronic pain runs counter to all of that. It’s a struggle and it’s your body attempting to rebel. You have very little control over your body and it prevents you from doing so many things. Chronic pain makes you feel horrible both inside and outside. On my bad days, I struggle to get ready for work; I struggle to smile; I struggle to do the basic things in life that are so easy for people without chronic pain.

I’m going to talk about what my medical condition is and how body positivity and sewing can help me recover.

Chronic Pain

There are a few different sources for what it feels like to live with chronic pain or illness. One of the best explanations is the spoon theory. I use this in conversations with my fiance all the time. The basic gist of it is that someone with chronic illness starts their day with a limited number of spoons. In her example, she uses 12 spoons. Each spoon is an activity: get out of bed/spoon, go to the bathroom/spoon, brush your teeth/spoon, get dressed/spoon, etc. If you run out of spoons, they are gone. You have no more energy. Sometimes you can borrow from tomorrow’s spoons, but that leaves you in a spoon deficit, which means you can’t do as much the next day or worse you end up harming yourself more and losing all your spoons for the rest of the week. Happens to me so often.

Chronic pain is exhausting. It takes a lot out of you. It leaves you unable to sleep and regain your energy. Or, if you do sleep, you wake up a lot or toss and turn or wake up in tons of pain. The pain makes it difficult to move normally. Your basic movements become very laboured. It’s sort of like moving through lava, if someone could survive that. You’re on fire and in pain, but the lava is thick and tough to move through; you aren’t dying, but you feel like you are. I drop things. I get frustrated. My hands don’t work properly. And everything is swollen and inflamed. I’ve gotten into this habit of removing my engagement ring and putting it back on to see how swollen I am. On good days, it slides right off without issue; on bad, I can barely remove it. Today, as I type this, I can barely remove it.

Chronic pain is your body rebelling. It is your body attacking itself. I don’t look sick, but I am suffering with every movement. On bad days, I don’t sew. On good days, I sew and I make jokes and I smile and I hop about. But even on good days, I am in pain; just less pain. It’s like the lava has ebbs and flows. Bad days, I am up to my ears in lava; good days, the lava is around my knees.

I recently read this article about understanding chronic pain from the perspective of a sufferer. I shared it on facebook and spoke about it for the first time there. I’ve spoken to a few people individually and mentioned a bit on here, but I guess I “came out” as a chronic pain sufferer yesterday. I’ve gone through a lot in my life, but this is definitely the hardest. The article really lays out how I feel, except for the last part about religion. I am not a religious person. I keep pushing forward, because I am incredibly determined and, in spite of everything that has happened to me, I am a very positive person and see hope in every corner of life. I am survivor and that keeps me going.

Onset and Diagnosis

Three years ago, I started having the worst years of my life. I was in top physical condition. I was well on my way to losing a bunch of weight and was the smallest I’ve been in my adult life. I was exercising almost everyday and walking  10km or more per day: during lunch break, walking home from work (this was an hour long walk), and walking at night with my fiance on occasion. I was eating incredibly well. I still eat incredibly well. I am a “no processed foods” kind of person and, while I do get them occasionally, I tend to steer clear of pre-packaged foods and make a lot of my own things, including breads.

All signs pointed to me being in great shape and then I started to decline. It started with an increase in migraines; I’ve had migraines since my early 20s, but I started getting them on a weekly or even daily basis. I started feeling dizzy on my walks home and I had to take breaks. I then stopped walking home. My right hip started hurting. My left knee had sustained an injury a few years before and I had flare-ups with knee pain. I slowly couldn’t exercise, because it was so painful. I started getting shooting pain from my right wrist to my neck and eventually my elbows were in constant pain. Over the space of a year and a half, I went from working out all the time to not being able to do much at all. I saw doctors; I got an MRI; I got xrays; I got massages; I went to a chiropractor; I went to a naturopath; I tried healing waters; I eliminated more things from my diet: soy, inflammatory fruits and veggies, red meat, etc. etc. I started seeing a physiotherapist this year at the end of January. It’s been helping to a degree, but again it’s like moving through lava and the change is so slow.

And, yes, I gained weight. Twice as much as I lost. I just got weighed on Tuesday and had a meltdown about it. They are just numbers, I tell myself, but numbers that reflect how much pain I carry. I never cared about being skinny, but I always wanted to be able to move, to dance, and to play. Not be the person who goes to bed at 7pm out of pure exhaustion with tears in my eyes because of the pain.

I was diagnosed in the fall with fibromyalgia. I’m still not convinced that this is entirely what is wrong with me, but at least it is something. I was also told by physiotherapists that my joints are hypermobile or too flexible. I am bendy. This unfortunately leads to an increase in injury and pushing your joints out of place with simple tasks. Sometimes when I twist my abdomen, I get a pain in my rib and feel like it is going out of place. I wake up at night and feel like my hip joint is out of place as well. If I carry too much weight in my hands, my elbows can feel like like are going out of joint. I’m working on figuring this out with a new doctor who is finally willing to help me get better.

Body Positivity

We’ve come a long way, baby. I started my body positive journey back in 2008 when I joined a burlesque troupe in St. John’s, Newfoundland, where I was doing my PhD (have since quit that due to a lot of unfortunate circumstances regarding supervisor neglect).

Burlesque is a great gateway drug to body positivity. You get to dress up in gorgeous clothes and “tease” the audience into submission. They scream for you to take off even the slightest bit. I never went beyond showing my corset, but did they ever beg for the gloves to come off! Stage performance is amazing. You can be anything on stage. I get the same euphoric feelings from my improv comedy performances. In 2009, I fell down some stairs and then moved to Toronto to be with my fiance. The fall was a few months of recovery with very little help from healthcare professionals. In spite of that setback, I still maintained a body positive outlook.

There’s tons of stuff that you can read about the body positive movement. I suggest checking out some TED talks on the subject.

Here are some basics of the body positive movement: your body is just fine and you should love it. Does that mean you can attempt to lose weight or that you shouldn’t be on a diet to be body positive? Naw. It just means accepting yourself. If that acceptance means going to the gym, do it. If it doesn’t, whatever. Love yourself. Kiss your mirror in the morning and tell yourself how wonderful and adorable you are. You only have one body in this lifetime and you have to treat it right. It also means ignoring the expectations that society sets for you. You are the only person that you should have an opinion on your body.

For me, that means embracing my style at any size. I wear dresses, because growing up fat I wasn’t able to. I was scared to show my legs. I was scared to wear anything that showed my curves. For me, body positivity meant I was free to stop thinking of what went in my mouth, what number the scale said, and free to live my life.

I’ve got through various eating disorders. I’ve overeaten, undereaten, starved myself, and, yes, I’ve purged a lot. Being body positive, helped me repair the tense relationship I had with food and listen to what I enjoyed, what my body was able to eat, and to not feel guilty for enjoying a bag of chips or a chocolate bar on occasion.

Body Positivity and Chronic Pain

This part has taken me a while to come to terms with and I’m not even really there. It’s tough to be positive about a body that rebels at every step. When you are walking through lava, it’s tough to take a moment and kiss the mirror and tell yourself how wonderful you are.

If you follow me on instagram, I have a lot of body positive talk about myself. I tell people I am adorable and I truly believe it. But you won’t see a picture on a bad day that reflects that, because chronic pain sucks the positivity from you. I am trying to change that.

What I started doing recently is taking self care days. I am having one tonight. As much as I would love to get back to my wedding dress and finish it, I realize when my spoons are running low and the lava is at my ears, I need a self care day.

Self care is body positive. It says that I am worth it. It says that my body deserves a hug.

What do I do on self-care days:

1) Limit activity: I may be working my day job, but I tend not to run errands except very small ones that don’t involve carrying a lot.

2) Indulge in something: This could mean getting a Frap from Starbucks or buying a favourite chocolate bar or making something tasty and easy for dinner that I don’t usually have. Something small that is outside my usual routine.

3) Watch something fun: I watch something like Gilmore Girls or I will watch Pitch Perfect or Mean Girls for the 400th time. I indulge in visual pleasures and especially in things that make me laugh. Laughter is the best medicine.

4) Take a bath in epsom salts and bubbles: Pretty self explanatory. Epsom salts are great for inflammation.

5) It rubs the lotion on its skin: After the bath, spend some time applying lotion and massaging my tender points. I use an all-natural ointment for muscle tenderness.

6) Hot hot heat: I have a castor oil pack and hot water bottle treatment that I find helps. I put it on my abdomen for 15min and then my feet for 15min. Mostly the castor oil just leaves the skin nice and soft and the heat helps ease the pain.

7) Meditation: I meditate and toss my phone across the room while I have the hot water bottle on me.

8) Streeeeeetch: I stretch each area of my body. Nothing too strenuous, but enough to work the muscles and take advantage of the heat.

9) Realize my limitations and accept them: I take some time to reconcile my feelings about the pain and my hatred over my body’s limitations. I try to accept that I cannot snap my fingers and be better overnight, but that it is a gradual process and I will eventually get there as long as I have hope to move forward.

Sewing and Chronic Pain

“How do these even go together?”, you ask. Sewing is one of those activities that can be a lot easier on the body. You are basically seated the entire time and you don’t need a huge range of movement. On bad days, I can’t put pins into the fabric so I stay away or I do small things. I’ve actually started doing several projects at once so I can switch between them and choose what I can and can’t do. I choose a good day and cut out a ton of patterns at once and then I just get to sew.

It’s important with any chronic illness to feel productive and sewing does that for me. I am able to work through it and create something beautiful and increase the outward beauty I have.

The single worst thing to do if you have a chronic illness is to stop everything. Don’t stop. Don’t sit on the couch. Don’t immediately quit your job. Don’t fall into the pit of despair. Don’t drown in the lava. Keep going. Do what you can with the spoons you are given. Create something. Some days, I just sketch something or I write something or I will tell myself a story.

There is lots of stuff out there about the benefits of creativity and mental illness. While there aren’t as many articles on creativity and chronic illness, the benefits are there. Creativity helps recovery.

The ability to create something even the smallest thing is a way of pushing through the lava. I can make it to higher ground and feel better. Improv helps, but that is very physically exhausting and leaves me feeling pretty horrible the day after. Sewing, on the other hand, is within my spoon limit. I can take as little as 20 minutes and work on sewing a seam and then eventually have a dress to wear and feel good about. Not only that, but it’s a dress that, when I wear it, I want to kiss the mirror and say wonderful things about myself.

Not only that, but I get to write about it and I get to take part in a wonderful community of sewing bloggers. You all help on a daily basis.

Sewing may not be the answer to healing my body, but it helps with all the mental fallout of walking through lava on a daily basis. It helps lift me out of a sad mood and work toward loving myself again.

Thanks for reading. ❤