True Story: I’m Chronically Ill

What's it like to be chronically ill? One woman shares her story as well as the resources that have helped her and how we can help friends or family with chronic illnesses. >> yesandyes.org
This is the story of Annie and her struggle with being chronically ill. 
Tell us a bit about yourself!
My name is Annie Martin, I’m 23 years old, and located in beautiful Prince Edward Island, Canada. I am the queen of being unemployed and I don’t have disability as I live with my common-law (instant disqualifier here). Instead, I blog and twitter frequently.
I write a personal blog, I am the FMS/CFS writer for The Fight Like A Girl Club, and I try to do guest posts for a variety of other chronic illness sites. I’m also addicted to lists, stationery, and the Internet, among other things.
How old were you when you started to get sick?
I have been sick since the day I was born. I was a month premature, and spent 8 days in an incubator. Following that, I had difficulties regulating temperature for the first year of my life and had to wear a tiny little hat! I had weird reactions to things for most of my childhood, but it was at 13 (when the hormones really hit!) that all hell broke loose in my body.
When did you realize that you weren’t getting better?
I’m not sure exactly when I realized that I wasn’t getting any better, as my illness as a teenager tended to come in flares. I think I had a lot of anger as a result of feeling that the world was unfair, but I don’t think I realized just how drastic this situation would get until I fell apart at the age of 18.I think it took me until recently to really realize that I would have to learn to adjust to this type of lifestyle, as it was unlikely to ever go away. Acceptance has made me a much calmer person, although I’m a firm believer that you can never give up the fight!Have you ever received a definite diagnosis about your health issues?
Yes and no. I have seen what feels like a million doctors, but it would probably be more like 25 or so. I have been given clinical diagnoses of asthma, fibromyalgia, chronic fatigue syndrome, myofascial pain syndrome, multiple chemical sensitivities, anosmia, clinical depression, generalized anxiety disorder, medication induced Bipolar Disorder, celiac disease, unknown autoimmune issues (can’t pinpoint), and currently being tested for narcolepsy and multiple sclerosis.

The fact that these illnesses are still largely not understood by the medical community has definitely caused a few stress issues. The brain is something that will likely never be fully understood.

What treatments are you on for your health issues? How do those treatments affect you?
My treatments at this stage of the game are mostly pharmaceutical. I take a multitude of medications (ranging vastly in toxicity and cost). I probably take 50 dollars worth of medication a day, if you include the ridiculous amount of vitamins + D-Ribose (a naturally occurring sugar which can repair at the mitochondrial level).

I have seen a naturopath in the past to no luck (she said I was too complicated for her assistance).

I have done acupuncture and physiotherapy for my pain and am now looking into massage therapy as well.

I also see a private psychologist, much to the dismay of my wallet.

I am still fighting wicked side effects, particularly from the latest addition of Modafinil and a BuTrans patch to my drug arsenal. As someone with serious chemical sensitivities, my reactions to drugs can be quite severe.

How do your health issues affect your daily life?
My health issues affect my daily life in ridiculous ways. It often hurts for me to move or walk, so as a result, I’m stuck in bed a LOT. I sometimes live on liquids because food is too painful to digest!

I have had reduced cognitive functioning for the last two years, and have had difficulty reading books, having conversations, and no longer can drive. I’m reduced to short blogging spins and excessive television watching (although I think the Modafinil might make a difference)!

I never know when symptoms are going to flare, which made getting my Bachelor Degree in Communications and a college diploma as an Executive Office Assistant much easier than holding down a job (as schools are more flexible with missed time). Still looking for freelance work and hoping the stimulants will help keep my mind moving!

How do the people in your life react to your health issues?
People in my life react to my health issues in very different ways. It is incredibly difficult to watch someone you love suffer and not be able to help them. As a result, many friends have fallen out of my life entirely. Some view me as a science project. Some have no idea what to say to me, so they just pretend the illnesses and pain aren’t there.

Others believe I am mentally unstable, and some think I am a drug addict. Some, like my family and boyfriend, are quite supportive!

What are the biggest misconceptions about people with chronic illnesses?
That we are lazy and crazy! A lot of people tell us to keep pushing, to just work through our pain. Sadly, there comes a point in chronic pain where it becomes far beyond what anyone can deal with physically or mentally. This is where people fall apart and need help – through drugs, through therapy, and sometimes by being bedridden because no one can fix them!

I have been hit with invisible illnesses, so other than occasionally seeing me faint or not be able to walk right – I look perfectly normal. This is what causes so much confusion, and why so many of us have tragic endings as a result of no support from government disability systems.

People who are struggling with chronic illness need a few things – financial support, physical support, and mental support. They should be reading self-help books, like the wonderful Full Catastrophe Living by Jon Kabat-Zinn. Being chronically-ill is like having a full time job. What you can take care of personally, research and take care. Search for ways to find assistance in government, friends, family, local groups, etc…

In terms of advice for family and loved ones – believe what the chronically ill individual is saying. People do not make up pain for fun. People are not in pain for attention. Pain is hardly understood by the medical community as it is. Doctors are just coming around to the chronic pain phenomenon, most of which is just shifting from psychological to physical diagnoses.

Be gentle and patient with them. Let them know you will still be there if their entire world falls apart. Help out where you can – kindness matters on both sides of this equation.

Do any of you have loved ones with chronic illnesses? Any questions for Annie?

P.S. True Story: I have Schizoaffective Disorder and True Story: I’m allergic to almost everything

photo by nomao saeki //cc

22 Comments

Engels=English

Ooh darling, I know you might not want/like pity, but as someone with 'weird unexplained' stuff going on myself, my heart goes out to you…

Just know that you are not alone.

Thank you so much for your beautiful and encouraging story.

xxx, Eliza

Reply
Willow

My sister seems to suffer from chronic something. It started around the same time you say yours did. It's frustrating as an older sister because she is known to be dramatic and it can be hard to tell if she's entirely honest. The older she gets, the more I think there is a serious problem. She has seen many doctors for around a decade now and they have plenty of theories. Most of her issues are digestive, though they started with psychological, menstrual, and then seem to have mostly manifested in intestinal/digestive. She also has suffered chronic migraines in the past year. She has a supportive boyfriend, and her school has worked with her. I don't know if there's anything I can do.

Is there anything you recommend?

Thank you for sharing your story and I hope at least management of symptoms gets easier if they can't figure out how to "cure" it.

Reply
Anonymous

I have similar symptoms. Find an alternative medical practitioner as western doctors do not consider this as a diagnosis. It sounds to me like a 'leaky gut'

Reply
Jessika

Ohhh it so totally sucks to have a chronic illness. I have a syndrome known as APS without further specification (or PGA depending who is treating me at the time).
It's an autoimmune syndrome where the body sets out antibodies to destroy – primarily – the hormonal tissues of your body. Hormones regulate basically everything in your body so I've had happier times. It has been casually hanging around since i was around 15, but it pretty muc exploded when I was 23. Initially it was manageable, now well, I have good days and bad days.

Fortunately I live in a country where medicine is highly subsidised (as in HIGHLY). Without those subsidies I probably wouldn't survive that long. One medicine alone is 3000 dollars/week.

They have found that my brain reacts differently to medicine than others. If there's a rare side effect I will get that particular adverse effect. Makes me a great study subject for students. As funny as this is.

Not to add insult to injury, but have you been screened for neuropsychiatric disorders? Or basal cell membrane disorders? I don't mean this in a demeaning way. Most likely you've been screened for god knows everything.

Brain dysfunctions are really sucky and since they know so little about the brain, and the nervous system on a whole, it easy to just pass any illness off as psychosomatic.

Reply
Michelle

I have interstitial cystitis, a chronic inflammatory disorder that effects my bladder. Essentially, my symptoms mimic a UTI even though I don't have one, so for over 2 years, my doctor assumed I had a UTI (or that I was lying about having an STD) that didn't show any active bacteria or that it had travelled to my kidneys. I was eventually tested for IC and it turned out that's what I had. I was told to eat a low acid diet (which pretty much means no fruit, which is awful and made me sick & exhausted) and then I was told I could take a medication that costs about $300 a month and isn't all that effective (so, um, no). Right now, I take an acid reducer so I can keep eating foods and I try to avoid foods & beverages that really incite my flairs, such as soda, orange juice, and tomatoes.

With all that said, I so relate to Annie. Going two years knowing that there was something wrong with me and my doctors were trying, but didn't know what to test for was awful enough. I can't really imagine going for a lifetime with that kind of thing!! I hope Annie finds her answer someday – keep fighting, girl, and you will find it (even if it means you get something named after you!) Good luck and you are very brave!

XO Michelle
http://lockedoutfashion.blogspot.com

Reply
Michelle

I have interstitial cystitis, a chronic inflammatory disorder that effects my bladder. Essentially, my symptoms mimic a UTI even though I don't have one, so for over 2 years, my doctor assumed I had a UTI (or that I was lying about having an STD) that didn't show any active bacteria or that it had travelled to my kidneys. I was eventually tested for IC and it turned out that's what I had. I was told to eat a low acid diet (which pretty much means no fruit, which is awful and made me sick & exhausted) and then I was told I could take a medication that costs about $300 a month and isn't all that effective (so, um, no). Right now, I take an acid reducer so I can keep eating foods and I try to avoid foods & beverages that really incite my flairs, such as soda, orange juice, and tomatoes.

With all that said, I so relate to Annie. Going two years knowing that there was something wrong with me and my doctors were trying, but didn't know what to test for was awful enough. I can't really imagine going for a lifetime with that kind of thing!! I hope Annie finds her answer someday – keep fighting, girl, and you will find it (even if it means you get something named after you!) Good luck and you are very brave!

XO Michelle
http://lockedoutfashion.blogspot.com

Reply
Anonymous

Have you tried meditation or deep breathing? Both of these may help to calm your system. I send my best wishes to you.

Reply
Emy Jo

Thank you for sharing, Annie! I bet you're giving hope to a lot of people going through the same thing. If I can chip in my recommendation for reading material (and they're short segments in a small book, so they're good for little reading durations!) is Apprenticed to Hope by Julie Neraas. She's also a chronic illness gal, and her book is her own way of getting through it all mentally, physically, spiritually — the whole whack.
http://tinyurl.com/6z487uv

I hope you're able to find relief!

Reply
Annie

Thank you for the lovely responses everyone!

Eliza, thank you – xoxo. Rooting for you!

Willow – I recommend you try everything and anything to get your sister some help. Pain is pain whether it is psychologically based or not. Are there any pain clinics in your region?

Maggie – I am a big fan of http://www.butyoudontlooksick.com and start writing there this week!

Jessica – I've been screened for everything there is to be screened for in Eastern Canada…but I am thinking of venturing further in the hopes of more knowledge.

Michelle – Thank you, you are so sweet! I hope your IC takes it easy on you!

And I do both mediation and deep breathing – both helpful.

Reply
Jessika

Annie: don't take my comment as any kind of critique. I get tons of advice on what to do/try/what doctors to see. I've been to various highly specialised clinics, around Europe and in the US as well, so thanks but no thanks, I think they've tested me for pretty much everything there is.

Reply
Toni

Thanks for this great interview Annie. Yes, being chronically ill can feel like a full time job. And you're so right that there is no one reaction that friends and family have. Some are so supportive and others drift away.

I hope lots of people with chronic illness or with a loved one with chronic illness read this post. I think it can help people a lot.

Reply
Aimee

I totally relate. I too have chronic illnesses. You are certainly not alone, and you are just wonderful for sharing your story!

Reply
Jenna

Annie, Your courage to tell your story is truly amazing. I spent years hiding my illness – ankylosing spondylitis – from everyone but my closest friends and family. Life is much better when you live it out in the open. And, for the friends you've lost and I've lost because of misunderstanding, it's their loss! You are wonderful! – Jenna

Reply
Alison

Thanks for this Annie. My favorite part was the last one, misconceptions. Nailed it. What is it with people assuming other people make up pain to get attention? And keep it up for years?

Very nice.

Alison

Reply
Erin

I've had a chronic illness for six and a half years…and yes, the part about it being so invisible/people not believing you is the hardest part. Thank you for sharing your story, Annie…xoxo

Reply
Stephanie Lane

I can relate to almost everything you’re talking about! I am 24 and I’ve been dealing with so many of the same issues as you. Have a loose diagnosis of chronic fatigue syndrome and adrenal exhaustion. Been pretty much bed ridden for the past 3 years. It gets so lonely and isolating. I live with my parents and they think I’m crazy and nothing is physically wrong with me. It’s so devastating and invalidating. Do you have any suggestions for making friends online who are going through similar things? Are you apart of any support groups or anything? It would be nice to have some friends who truly understand what I’m going through. Sending love and positivity your way! <3

Reply
Jessica

Thank you for sharing your story. My husband has been suffering from trigeminal neuralgia which used to be called “the suicide disease”. It started 3 years ago and went away for a while only to come back in full force. Drs did not have offer any help other than drugs. They did not know how to solve the problem! Luckily we happened across a chiropractor and have been working through an intense treatment plan with her. Long story short: He had longer pain free stretches and has been pain free for a few days in a row now!

It sounds like you haven’t given up seeking information and finding the right health care provider; good for you! You will find it!

God bless,

Jessica

Reply

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