Terra Sigillata

Acknowledging chronic illness

Wow. I really don’t deserve this but I truly appreciate your concern, advice, and best wishes sent over the last few days following my post on losing, and slowly regaining, my voice. I didn’t know anyone was still reading but some of you must have seen my RSS feed pop up under the cobwebs on your reader.

What’s interesting is that I generally look well in person other than getting winded when walking too fast or going up stairs (yes! I can walk up stairs now! w00t!). And to be honest, the loss of 14 lbs I didn’t need has actually made me look a little more fit. I’ve still got a long way to go in my recovery but people think I look better than I actually am.

So among the comments I received in the last few days was an exceptionally prescient and timely one from Lisa Copen. She wrote the following in response to my February 7th post, “Meditations on those with chronic illness,” a post I wrote when I was about at my worst.

Thank you for your kind simple words at the end of your post that say, “So today, my heart goes out to all of those who suffer with chronic illnesses every day. You have my admiration and respect.”

As the founder of National Invisible Chronic Illness Awareness Week (and a patient of 17 years of rheumatoid arthritis) I can say that just hearing the simple validation from others is what people crave most. We did a survey a few years ago and with over 1500 respondents what they “hate” hearing the most is “but you look so good!” There is some part of our human nature, despite whatever kind of suffering we are going through, be it physical,mental, emotional, financial, whatever – that desires someone to say, “I don’t know how you do it. I respect that it is hard and you inspire me.”

Blessings on your continued endeavors.

Lisa didn’t mention it in her comment but she is also founder of a non-profit group called Rest Ministries, “a Christian organization that serves the chronically ill through a variety of programs and resources.” I also added the link to National Invisible Chronic Illness Awareness Week because Lisa didn’t have it. We get a lot of self-promotional stuff here in comments and e-mail but Lisa’s comment clearly came from the heart. So, I’ll promote her work for her because she’s doing good stuff.

While I haven’t vetted all of the medical information at Rest Ministries, it seems to have a lot of useful suggestions and tools for those with chronic illness and their caregivers and loved ones. A quick glance at their section on alternative treatments wisely notes the risks of infection with acupuncture and suggests instead more useful motion exercises such as tai chi. For folks needing help around the house, they note how to go about screening cleaning services. They have what looks like a good bookstore and I may even have to buy one of their $8.50 T-shirts that have 33 ways to encourage a chronically ill friend (jpeg of shirt back).

Even if you are of another faith, atheist, or agnostic, you may find something useful there.

Thank you, Lisa, for stopping by.

Comments

  1. #1 Art
    May 4, 2010

    Take it slow. Allow yourself time to heal. Indulge yourself and get pampered as much as possible. Sleep in, eat ice cream, take long luxurious baths, get some light exercise. A walk sounds about right.

    Spend a few minutes contemplating how good you have it. A century earlier you would be dead. Let that sink in a bit as you sip your favorite libation. Then a long afternoon nap on silk sheets.

    Be happy, enjoy the little things.

  2. #2 Jason Bussell
    May 4, 2010

    You don’t need to worry about infection with acupuncture. In the States, all needles used are pre-sterilized, single-use, and disposable. Tai Chi is also good and should be incorporated, but will not be as palliative nor as healing as acupuncture. A Recent survey in Britain looked at data from 30,000 treatments and found no cases of infection. http://www.bmj.com/cgi/content/full/323/7311/485 has the study.

    Jason Bussell MSOM, L.Ac
    President Emeritus – IL Assn of Acupuncture and Oriental Medicine

  3. #3 Louise Bryant
    May 5, 2010

    I was about to make the same point as Jason D about acupuncture—it is perfectly safe in North America. I also have rheumatoid arthritis, and recently acupuncture was the only treatment that had any positive effect on my incredibly stiff neck. Please don’t further limit people’s treatment options by spreading misinformation!

  4. #4 Joe
    May 6, 2010

    @J Bussell, the article to which you linked does not contain sufficient information to assure us that there are no cases of infection. The article only says that none were reported by this self-selected group of acupuncturists. (And it does not pertain to the USA, nor to non-medical practitioners such as yourself.) Moreover, FDA-approved needles are single-use; but you cannot guarantee that nobody re-uses needles. In addition, there are other aspects to aseptic technique which may be violated. For example, I recently saw a picture of an acupuncture student who was not wearing gloves, despite two boxes of them visible in the background of the photograph.

    @L Bryant, your story is an “anecdote” which proves nothing. What you lack is good quality research that demonstrates that acupuncture is anything other than an elaborate placebo.

  5. #5 Lisa Copen
    May 8, 2010

    Wow. Thank you for the kind post that was most unexpected and very appreciated. I find it interesting that so many comments in regard to your post immediately jumped on the topic of “acupuncture” of all things though.

    I myself have used acupuncture (personally, it didn’t make a difference); but as with anything on our site, we do not advocate anything in particular with alternative treatments but rather point people toward places where they can find information to be the best advocates for themselves.

    So many people with illness are simply EXHAUSTED and also are given a bad time when they ask questions of medical professionals so they do occasionally let questions they should be asking slide.

    Having survived the flesh-eating bacteria in the fall of 2008 and having an 8 day hospital stay and 6 weeks of home health care afterward, I am very blessed to still have my foot and leg.

    For most people like myself with poor immune systems, and then drugs that make it even harder to fight off even the smallest of infections, we must not be passive in making sure our surroundings (like hospital rooms, urgent care, labs, and alternative treatment places) ARE using the best precautions.

    But all that aside, our main purpose it to encourage people while they are living with illness and continue to educate church leadership who believe you “must first be healed” before you can “have a purpose” or be involved in ministry.

    I am blessed to be around many, many volunteers who give of their limited energy just to encourage one more person. That is what we are about. Our hope is not necessarily in the next treatment or drug approval, because all that will at some time fail us; so our hope is in the Lord and that there IS a purpose in the pain and trials, even if God is working “under cover” at the moment.

    Thank you for your support. I pray you will continue to feel better!

  6. #6 Joe Magrath
    May 8, 2010

    @ Lisa Copen, you wrote “…we do not advocate anything in particular with alternative treatments …”

    Perhaps you should. So-called “alternative treatments” are those that are not known to be safe and effective; so they put patients at risk with no mitigating benefit. Moreover, they can be a financial drain. Common sense tells me that people with chronic conditions are susceptible to persuasion from snake oil salesmen. It would be a service to tell the truth rather than say “figure it out for yourself.” In my experience, most people cannot do so.

  7. #7 Lisa Copen
    May 11, 2010

    Thanks, Joe, in regard to “Perhaps you should. So-called “alternative treatments” are those that are not known to be safe and effective; so they put patients at risk with no mitigating benefit.”

    If anything, I am on the skeptical side of most of them, yet I think each individual must weigh the risks and options and we always encourage them to discuss it with a physician. I’ve learned over the years with my ministry/non-profit to know what our purpose is and our goal, and pointing people toward good resources where they can discuss alternative treatments with physicians, or see with the NIH, etc. says about it is our best option. We are an organization that encourages and provides resources for the emotional and spiritual part of the illness journey.

    Like any of us, we can’t be all things to all people and need to know when to trust our peers who we’ve built relationships with for the areas in which we are not experts, but they are.

    You may note I have a new video up about prednisone side effects at http://www.youtube.com/restmin#p/a/u/0/lQjbviSntHo . In a post about it I gently wrote, “Pleeease don’t write to me and tell me all the reasons I should not be on prednisone. I do know this. But it’s a long story and I chose to take prednisone and be able to keep walking, then not take it and be in a wheelchair.”

    Making our own medical choices is hard, but very personal. I’m confident I send people to good sources to get the best information.

    Thanks for the conversation!