Posts Tagged ‘Chronic illness’

InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”

Here we go again – something that links directly to doctor-patient communication, and doctors attitudes about their hard-to-diagnose patients impacts us in ways they never imagine. Perhaps the health community should rethink their approach to patients like us…and maybe then we won’t have the issues that this blog by Michelle of “Living With Bob” discusses.

If you have a chronic, but invisible illness, you may have noticed that there lacks (for most zebras) the rally and support experienced by those with more visible, well-known conditions.

Friends and family members makes passive-aggressive comments about your constant “issues.” Or, they stop including you in their lives, period.

Michelle, wrote an excellent post about this yesterday.
Please read it here

Regular readers of my blog will know this is something I’ve had to endure for several years now.

What baffles me is how ignorant the doctors are…you present with several bizarre, subjective (not objective!!) and tangible conditions, a history of hospitalizations, surgeries….yadda yadda yadda…and STILL they question you, almost implying you are imagining all the problems you have.
The day I can will my blood tests to be abnormal (as they are) is the day I’ll be Queen.

My support comes mostly from strangers I’ve only “met” through the interwebs – others just like me, with exactly the same conditions – or others that are wonderfully empathetic. But no one IRL.

So, what has your experience been?

Have you been abandoned by friend and family?
Do doctors constant question you about “really” being unable to work?

YMMV – I’d still love to hear your about experiences.

LAST week was National Invisible Chronic Illness Awareness Week!
As is typical with chronic illnesses, I was not able to complete this due to some symptom issues-until now. It IS still the 15th…so I hope I get some credit for getting my post in under the wire!

I found out about this from fellow blogger, Lindsey, of Musings I’d a Dysautonomiac – you can read her post here: http://dysautonomiac.com/2013/09/11/invisible-illness-week-2013/

Invisible Illness Awareness Week also encourages bloggers to complete the “30 Things About My Illness” questions – see my answers to them below.

1. The illness I live with is:

Autonomic Nervous System Dysfunction (which comes with a mega-long cast of not-so-fun individual issues such as intermittent gastroparesis, severe dry eyes; small nerve fiber neuropathy; labile blood pressure/sudden drops or increases in BP, chest pain, tachycardia/palpitations, etc.); Unspecified Connective Tissue Disorder (joint pain and swelling, liver inflammation, vision disturbances, sun sensitivity, livedo reticularis, Reynaud’s Disease); Sacroiliac Joint Dysfuction; Chronic Migraines; Delayed Sleep Phase Disorder/Severe Insomnia

(Sounds like I belong in a nursing home…at 49.)

2. I was diagnosed with it in the year:

I was diagnosed with “autoimmune issues” and “Reynaud’s” in 1987…the rest just kept on coming.
The autonomic disorder surprised me in August 2012 with 3 ER visits and a week long hospital stay which lead to my diagnosis,

3. But I had symptoms since:

I had the migraines since 1975 and the sleep disorder since 1968 though…

4. The biggest adjustment I’ve had to make is:

Finding a reason to just keep going on, day to day. Half of this stuff took away my ability to be dependable enough to continue my career. Then the rest of the illnesses took away my resilience and perseverance,

5. Most people assume:

Probably that I’m lazy or just trying to get sympathy or attention.

6. The hardest things about mornings are:

I never know how I’ll feel – what joints will hurt or be swollen, if my SI will be out of place, or if my BP will be too low or too high – or how my heart will respond when I sit up. I never know when – or if – I’ll get any sleep at night, so my morning may be your afternoon.

7. My favorite medical TV show is:

It WAS “House.” It was one of the most medically accurate, yet the most unrealistic shows in the medical genre. There is no such thing as a doctor that is a “diagnostician” like House. We all just WISH there was! I did learn how to do differential diagnoses charts from the show, which my docs seem to appreciate – they show the connections between all my weird medical issues.

8. A gadget I couldn’t live without is:

My Interferntial Stim Unit (I have 3. My favorite is my Empi IF3 – as it is VERY strong).
I’m also fond of my iPad Mini.

9. The hardest part about nights are:

Wondering whether or not I’ll get to sleep.

10. Each day I take:

Lots of breaks to lay on the floor to get my heart rate to come down, and my BP to stabilize. It also gives my SI and painful joints a break.

11. Regarding alternative treatments I:

Have tried literally just about EVERYTHING out there – including, but not in any way limited to: reiki, chiropractic, all types of massage, acupuncture, Thai yoga, Chinese herbs, more supplements than I care to think about, EMDR, CBT, “voodoo acupuncture” (done by a counselor without my knowing what she was doing) – all a HUGE waste of cash – except for massages, as they do feel good, but aren’t a cure by any means. I honestly believe that most alternative treatments that “work” do so due to the “expectancy effect.”
Sorry folks, but I’m a scientist.

12. If I had to choose between an invisible illness or visible I would choose:

Definitely VISABLE. I am SO SICK AND TIRED of being told, “you look just fine to me.” If I looked sick, maybe I’d get a bit more attention from the medical professionals as well, and people would respect the fact I was sick and let me sit down on the subway so I don’t have to sit on the floor (gross) to keep from passing out when my BP drops.

13. Regarding working and career:

Whats that? My career in the legal field was put to an abrupt end when I wasn’t allowed to recover from my 4th back surgery -it was “come back full-time or leave.” I managed to get my biology degree and worked briefly in biotech until my medications and pain made it impossible for me to maintain any sort of schedule. Now, with the addition of the autonomic disorder – I can’t even work a volunteer job. I’ve tried. All this medical mayhem makes me unreliable – which is NOT a personality trait I had before and is completely attributable to my medical weirdness.

14. People would be surprised to know:

I really don’t want to go on living. It’s just getting worse. I watched my mother decline miserably. I don’t want to get there.

I’m so hurt by the people in the so-called support networks that choose to ignore any facts I present to try and help them learn about their conditions and how to appropriately advocate for themselves…my docs tell me I should use my knowledge to help others, but no one wants my help. It leaves me feeling quite useless.

15. The hardest thing to accept about my new reality has been:

I will never be the person I was on track to being 12 yrs ago.

16. Something I never thought I could do with my illness that I did was:

Went zip-lining in 95 degree heat in the California desert. It was awesomely and very difficult and worth every pain, palpitation and the post-sun welts and migraine.

17. The commercials about my illness:

There aren’t any…unless you count the ones that cover the autoimmune stuff like RA, which my connective tissue disorder fall under). They are so unrealistic. If you take those type of meds (“bio logics”) that they advertise, you CANNOT do the things they show the people doing. You can’t get bruised, bitten by bugs, or travel to places that don’t have health standards equivalent to the US. A good friend of mine died because he was on one of those meds – for “moderate RA” (an autoimmune disorder) – had a minor accident that resulted in an internal bruise – missed by the docs – infection developed – and he died 24 hrs later. So the commercials for the autoimmune illnesses are… INACCURATE.

18. Something I really miss doing since I was diagnosed is:

Having a purpose. (See. 14, above)

19. It was really hard to have to give up:

Working out with weights.

20. A new hobby I have taken up since my diagnosis is:

Napping.

21. If I could have one day of feeling normal again I would:

Find someone to go country dancing with – not line-dancing – but two-stepping, swing dancing – the couples stuff. After a good long workout in a hardcore gym. Then eat a HUGE steak and lobster meal. And have an alcoholic beverage or two, preferably with little umbrellas.

22. My illness has taught me:

To be grateful for the tiny things I can complete that most people do without thinking.

23. Want to know a secret? One thing people say that gets under my skin is:

When people say I must be OK if I’m out driving or going places.
When people say in a snarky way, “I wish I could lay around all day.”

(I stole this next part from Lindsey-because it’s EXACTLY how I feel): Really? Because I wish I could go to an office everyday and make a difference. Remember, it’s not like we stay home when it’s time to work, but we’re out partying and having fun the rest of the time.

24. But I love it when people:

Are nice to me and understanding. Which is VERY rare here in MA.

25. My favorite motto, scripture, quote that gets me through tough times is:

“He who has a why to live can bear with a kist any how.” – Nietzsche

26. When someone is diagnosed I’d like to tell them:

Get ready to be your own best advocate. You are in for a battle with almost every medical professional you will meet. Good luck finding doctors to help you – but be willing to take advice from people like me that know how to navigate the system, know how to find the good docs, and know how to research the issues. (I really get upset when people on social boards plead for help, then don’t respond when I offer to help them. I guess they just want to whine.

27. Something that has surprised me about living with an illness is:

No one wants to be friends with a sick person. Period.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My husband lets me nap whenever. He understands “sleep debt.”

29. I’m involved with Invisible Illness Week because:

I want people with chronic illnesses to start being proactive about taking control of their healthcare and the course of their illnesses.

My negative experiences with the so-called support networks haven’t been at all positive – if anything they support the continuous whining and complaining – which is quite UNhealthy. Some of the boards sound like a game if “can you top this?” – each post about aches, pains, pills and total cluelessness about the conditions they have is “worse” than the next!!

I don’t see how the enabling and encouragement of constant complaining is considered “advocacy” or “raising awareness” or “support.”

I believe that by teaching people to do responsible research, to gather the facts about the illnesses they have, and what they CAN do about their issues IS advocacy and support.

30. The fact that you read this list makes me feel:

Surprised.
🙂

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I was blessed to have been asked to review this book, Chronic Resilience, by Danea Horn (Conari Press, 2013) for the Journal of Participatory Medicine. I usually avoid books that are classified in the “self-help” category – those of your that have read my blog postings know how I feel: that there is no room for unicorns in the management of medical issues ..nor bunnies, rainbows or platitudes and false hope (which to me  =  denial).

Well, I so happy to say that Danea Horn’s book was an amazing, pleasant surprise, and one that I would highly recommend to anyone that has a chronic illness. The book is marketed towards women, but I do not see why men could not benefit from the content as well.

I suffer from three different, unrelated chronic illnesses, so this book was especially relevant to me. I have read many books, articles, research papers and blogs tailored to the individual with chronic and unique medical conditions. “Chronic Resilience” is the first book I’ve read that highlights and teaches the reader to embrace the strength gained when going through a traumatic event, and continue to apply it to living with a chronic illness. (Uniquely, this coincides with a trend in the psychosocial community to look at PTSD not as a “disorder,” but as the gaining of “post-traumatic resilience” – strength achieved through surviving trauma and adversity successfully, and learning new skills throughout that experience. Danea educates the reader about this special resilience via “journal prompts” – suggestions for self-exploration – along with the stories of others with chronic illnesses and the unique skills they found that they possessed during the course of their illnesses. It is important to note that the way in which she presents the journal exercises doesn’t feel like at all homework, or a like a typical journaling assignment from a therapist. All of her journaling exercises are in context with the subject matter, and bring to light the resilience that we as humans develop when faced with adversity, but often forget about when the long and complicated names of diagnoses, test results, and the fears of what the future may bring are piled upon us.

The “Chronic Resilience” unique journaling exercises help to make YOU the focus of the book. I found the most important activities to be in the first few chapters, as these helped me to become not just the reader of the book, but an actual, active participant in the book. I wasn’t just learning about others’ experiences of their inner resilience despite having chronic illnesses – it honestly felt as if my saga was woven into the stories presented. I had expected a chapter about each woman that had graciously volunteered their story for inclusion in this book, – but was ecstatic to find that Danea had seamlessly integrated the challenges faced by these women within each chapters. She uses a different woman’s experience with which to illustrate a different aspect or lesson of human resilience. By combining these narratives with the emphasis on a specific aspect of resilience, along with the journaling prompts, Danea helps the reader to identify her own strengths and beneficial place in her own life.

Danea speaks specifically about taking “ownership” of your health. She emphasizes the necessity of caring for your body, listening to it’s cues, knowing when to slow down, and learning your new limits. Most importantly, she emphasizes that “ownership” is not “becoming” your illness – being “a cancer patient” or a person that “suffers from fibromyalgia.” Some of the things “ownership” is: learning what IS in your control in your life, becoming educated about your condition (from valid sources), assembling (as Danea calls it) a “kick-butt medical team,” and seeing a counselor when you feel overwhelmed with your diagnosis or its limitations.

Overall, Danea’s book is a refreshing breeze in the mire of self-help books about dealing with chronic illnesses (those typically heavy with platitudes,”positive affirmations,” lists of impossible rules to follow, and the “chin-up buttercup” rainbow and unicorn imagery.) She provides lists of helpful resources throughout, and lists many interesting and relevant references. Although this book wasn’t written specifically from the “e-patient” perspective, it does directly address how to become a participant in your health care – and how to successfully communicate your needs, fears, concerns and questions to doctors, family and friends. Danea has done a truly unique and beautiful job of teaching us how to be human, in spite of what obstacles we have in our lives.

I do hope that is you have a chronic health challenge, or know someone that does, that you pick up a copy of this book.