SPECIAL FEATURE for Invisible Chronic Illness Awareness
Last week was Invisible Chronic Illness Awareness Week! Below is part one of a two-part article on the *zap* of chronic pain and how we, as patients, continually *POW* give it all we got! To a patient with invisible illness the symptoms and realities are very VISIBLE to us. Ironically, I would have posted this last week but I dealt with my own set of chronic issues... I kept going though and I give you this two-part special. After all, awareness might last a week but we live with our conditions 24 hours a day, 7 days a week, 365 days a year. No holidays. In fact, I did miss celebrating Christmas last year with my extended family because of my nerve pain due to my Neurofibromatosis type III or what is called Schwannomatosis (www.ctf.org/). So, it is a very true fact this kind of illness makes for many sacrifices, challenges, prayers and silent moments, and for me, a chance to tell it like it is. That's why I have The Healing Redhead Web site, to give co-chronic healers a hand and give those around us a glimpse in, if just for a second, and to focus on a life that is very real and so often misunderstood. It can even be a teeth-grinder at times, as you will soon see... in Part II.
Thanks for stopping by!
It might happen one day.
It might happen over a period of time.
It may happen again and again and again and you don't have a specific name for it.
It's a sneaky one that invisible Illness! It can make its way in and out of your life and back again as quick as that guy you dated who loves commitment so much (read sarcasm). Over time, little by little, the signs start to reveal themselves. A fall. A mysterious pang here, no it's there. Then, a surgery goes awry. Then another. Pain itself starts to escalate as does your anxiety. Before you know it, months pass or maybe a year or more... you've been left without a career, hobbies, and even the home you own has a for-sale sign and you live with family now.
Symptoms related to invisible illnesses are often complicated so much so even David Blaine and David Copperfield can't make these illnesses visible with their powers. The patient's symptoms lay hidden under the surface and hidden from those around them -- family & friends to doctors & dates who can't tell a single thing is going on unless that person speaks up, winces or complains. See, the symptoms manifest largely on the inside, hidden from view, and the person suffers in mostly silence, especially during a flare-up or spike on the pain scale. Invisible doesn't mean out of the way and taken care of; if anything this person is more vigilant. They are at the doctor more, the MRI scanning bed, and off to get blood tests. It is sort of like flipping the inside out and seeing what the story is telling us. The worst thing anyone can do is ignore symptoms and refuse to go to the doctor. To me, that's putting one foot in the grave. I have a family story to back me
up. But that's later. An another story entirely.
Speaking of family... brothers, sisters, parents, and extended family sometimes don't believe us and what we go through on a daily basis. Friends, too, may not understand and may even leave our side. Others may try to "fix" us and when that doesn't work they too will find other "cases." If this is something you deal with, I have a great book titled, "Why Can't I Make People Understand" by Lisa J. Copen. She says it to the reader straight, not a lot of fluff. But that doesn't mean Lisa isn't compassionate. She is one of our best resources as patients of chronic illness and as warriors of invisible illness. This book really helped me and I go back to it from time to time when someone might say a thing not too friendly or just not thinking. This author helps us step back and put things in perspective. I like her because she's an insider who knows what this journey is like so she's not writing about stuff she hasn't lived or seen. It's is as authentic as it gets.
It's the pain, struggle, and symptoms all encased in the human body for no one to see. It's waking up each morning and knowing getting out of the bed and to the bathroom will be the first of several, if not many, challenges of the day. The shower has become less of a relaxing, comforting getaway and more of an overwhelming hygiene routine that wears me and my patience out (you too?)! But at least this patient is clean and smells nice! In most cases, I don't speed right through and dry my hair like during my previous life. It's hard for me too because hanging out with wet hair is one of my biggest pet peeves but right now I have to slow my pace and deal with it. I'm pretty out of it energy-wise after my shower so I may just try to comb out part of my hair or pull it back in a clip until I regain some energy to continue. I don't know about everyone else out there in ChronicLand but I am still amazed (after a few years) by how a semi-warm shower can leave me zonked, so tired, out of energy. If you feel the same way, talk to me.
Combing, drying, and styling are for the experts! I see the celebs & reality "stars" go get their hair and makeup done and think, nope! They should do their own makeup & their own hair and
give their beauty and fashion pros to the cancer hospitals and housebound patients with invisible illnesses! Great idea, huh? At least there should be a program like that! I think a great name is: Dr. Glamour or The Dr. Glam Squad! *Tell me what you think of the Dr. Glam idea in the comments section!
It disappears then reappears like that rabbit in a hat or the coins behind your uncle's ear. The pain gets trickier, more surprising every time. The symptoms always seem more intense, more complex, a grand puzzle with constant moving pieces. Some physicians are part of that working puzzle while others are less willing to help The Chronic Pain Patient and turn them away. I want to see chronic pain centers become more integrative and not just rely on pain pills and surgeries as answers. These centers and the doctors who serve this particular population, in general, need to be more holistic in their service toward patients -- no matter if it's MS, Neurofibromatosis, or Crohn's Disease. I've been enlightened on this subject by reading "The Chronic Pain Solution: Your Personal Path to Pain Relief" by Dr. James Dillard. It was a fascinating read and one that gives real solutions to patients, solutions that make sense and provide inspiration. Dillard covers a large gamut of topics, including activites, diet, and how readers can develop their own pain control plan. I highly recommend it.
Stay tuned for Part II coming soon...
**I was not paid to recommend the books featured in the blog post.
©The Healing Redhead