Tony Snow: Illness Doesn’t Change the Person You Are | Rheumatoid Arthritis Warrior

Tony Snow: Illness Doesn’t Change the Person You Are

Over the last few years, some people have faded out of my life after RA made it impossible to do most things I used to do. Some people didn’t want to hear about illness, or pain or medicine. They didn’t understand what I meant when I said “can’t.” I never ask for sympathy for being sick. I just want to be a regular person, whatever that is.

The secret of learning to be sick is this: Illness doesn’t make you less of what you were. You are still you. ~ Tony Snow

Hair picI got my hair cut the other day. For many years, I would wait six months between haircuts, touching up the front and letting the back grow long. Lately, I’ve been going a lot more often. Maybe, it’s easier for me with the RA. And maybe there are other reasons?

No one was more surprised I actually had Rheumatoid Arthritis than I was. Even my hairdresser remembers it. She started cutting my hair right before the RA got so bad. I remember being afraid to let her touch me because I hurt so much.

She saw me when I couldn’t raise my hands up over my head at all. I was such a horrible mess that the only time I ever looked groomed was when she finished with me. She knows how sick I actually do look on the days I can’t eat from the RA fevers. At times, she’d say, “You don’t look good.” And she’d know that it was somehow a complement to have someone notice that.

Other times, she’d work her magic to make me look good and then pay me the complement. The most comfortable moments I had some days were while she massaged my neck. She had no idea what Rheumatoid Arthritis was and I remember her looking puzzled when I finally told her about my illness. RA sounded so far-fetched since most of my symptoms were invisible. I remember wondering if she believed me.

Over the years, she has watched me go through all the treatment changes and setbacks. Last week she said, “It must be so hard for you having this disease since I know you would rather not take medicine.” How did she know? Well, she’s pregnant with her first baby right now, so she had asked me about childbirth. I told her I had all my babies at home. We laughed that we both have a little of a hippie streak.

For years, I struggled to find someone who could do a good job on my hair. Who would have thought I’d find her and then be gladder about how she treated me than how she fixed my hair? She doesn’t treat me like I’m sick. She doesn’t insist that I’m not. She just treats me like a regular person.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

Leave a Reply

Your email address will not be published. Required fields are marked *


22 thoughts on “Tony Snow: Illness Doesn’t Change the Person You Are

  • September 6, 2010 at 7:39 am
    Permalink

    Kelly, I am also blessed with a hairdresser that has seen me through my worst, over the last 15 years, at least. She always understands when I have to cancel at the last moment, and tries to make me look my best, despite the ups and downs that RA and it’s meds bring about-whether it is uncooperative hair texture changes, or fuller cheeks from high-dose prednisone, or just looking ill. She realizes that I am MORE than just a disease. We still want dignity and respect,and want to feel good about ourselves, as much as possible,anyway. A visit to her salon is part of my RA treatment, because of the positive emotional effects that result.

    Reply
  • September 6, 2010 at 7:57 am
    Permalink

    Dear Kelly, thank you for being available for others like me to reach out to. I have RA and after several years of crazy pain and too busy doctors, it all makes sense now even though i don’t want this DX. I can, however go to my computer and read caring thoughts from real people like you who understand what it feels like to not be able to reach over your head,or the fevers and fatigue. I am also moved by some of your other notes that speak of giving thanks to God each day. Thank you Kelly for the times when I feel all by myself i can find someone who can relate and cares enough about others to uplift and enlighten regarding this dis-ease. I have gained much information about RA from you.

    Reply
    • September 6, 2010 at 9:36 am
      Permalink

      Thank you for the sweet not Debra. I’m hoping we can spread awareness & compassion about RA so there will be more understanding beyond our community! :rainbow:

      Reply
  • September 6, 2010 at 9:00 am
    Permalink

    No one should under-estimate the power of a great hair dresser. To find one that is also kind and compassionate makes you a lucky girl.

    Reply
    • September 6, 2010 at 9:29 am
      Permalink

      LOL Gina. So true. It’s an important profession – & I can’t wait to show her this. 😀

      Reply
  • September 6, 2010 at 9:09 am
    Permalink

    Dear Kelly,
    Thank you SO much for sharing this! I know exactly what you mean.
    I’m sitting here right now trying to brush some of the tangles out of my hair. Will pass the brush to my husband, just can’t do it.
    I’ve also been blessed to have a hairdresser like yours.
    3 Cheers for Elise and————- : )

    Reply
  • September 6, 2010 at 9:10 am
    Permalink

    Also Love what Tony Snow said. I always liked him, and he comes to mind often!

    Reply
  • September 6, 2010 at 9:23 am
    Permalink

    Hello. I was struck by your use of the words “RA Fevers” in your article. Can you tell me more about this?

    Reply
    • September 6, 2010 at 9:27 am
      Permalink

      Jackie, fevers are a very common symptom of RA. There is a post coming soon about that. Hopefully, I’ll get it done this week. You never heard of it?

      Reply
      • September 6, 2010 at 10:25 am
        Permalink

        I’ve had the RA fevers full blown this weekend. I know its not menopause – I went through a surgical menopause over 10 years ago…

        Reply
  • September 6, 2010 at 9:37 am
    Permalink

    No I haven’t. I’ve actually had a lot of luck with my medication and have not experienced any more pain since going on it. However, since last March, I’ve had about 4 weird episodes of all of a sudden, feeling like I have the flu. The last episode last week was the worst. Terrible body aches, chilling and the one hallmark is that my ribs/lungs hurt – just like I have pleuresy and it’s painful to take a deep breath. The weird thing, other than my chest aching for a few days, the feeling of having the flu is gone by morning. I mentioned it to my rheumy who did a chest x-ray and said I was showing “fibrotic changes at the base of my lung” and he referred me to a pulmonologist. I just saw him 2 weeks ago and he’s having me tested for various things – ruling things out. No idea what’s up for now, but he did mention to me that it may turn out the RA or the MTX is causing my lung issues.

    Reply
    • September 6, 2010 at 9:57 am
      Permalink

      I hope its not serious, Jackie. It’s good you are getting it checked out.

      Reply
  • September 6, 2010 at 10:06 am
    Permalink

    I can agree completely with Tony Snow, i am completely misunderstood by those in my so called “family” and of course aquaintance’s are basically the same once they get beyond their initial contact, people only wanted to hear of my illness so they could gossip and have conversations with their gossipy friends, many had nothing else to talk about because their lives were empty, perhaps more than mine.
    Friends are like gold they are far and few and very precious, they are easily lost or stolen but when you commit your heart to GOD you will never lose him, he is there beyond the end. I am not a religious person but know we are not alone.
    A friend is perhaps the best listener, all of us needs someone to hear their story, we are by nature a being that needs this contact, finding a doctor that listens is golden and perhaps the best weapon you will have
    in your fight with RA.

    Reply
  • September 6, 2010 at 10:14 am
    Permalink

    Thanks Kelly for more great insight into what we warriors are dealing with. I esp liked the Tony Snow quote…he was an outstanding person who held himselve with dignity thru out his ordeal with cancer. God Bless his family too. This made me think very deeply about who I have become over the past year, I try not to complain but as you know it is soooo hard when you are in constand pain, it does effect who you are but I don’t think it can effect your soul unless you let it. I am still me with the same feelings, love and faith I had before RA. And I loved your thoughts on your hairdresser, I too have a wonderful friend in mine (she has been doing my hair for 20 years)..she is thoughtful and caring and helped me tremendously thru the recent hair loss, I love her dearly!

    Again, thanks Kelly..God bless you and all our wonderful hairdresser friends, they are our angels O:-)

    Reply
  • September 6, 2010 at 10:21 am
    Permalink

    Its sad that I’ve felt so crappy for so long that people stop treating me like a regular person and stop asking me to do things knowing that this damned RA is still full blown and remission is no where in site. How do you find the energy to keep going? I’ve let my hair grow long just because its easier to pull up than to go to my friend (a hairstylist). The thought of climbing up into my truck (I want something lower to the ground), walking from the parking lot to the salon, hating the way I look and feel. I’ve become invisible in my world of well people… Sorry 🙁

    Reply
    • September 6, 2010 at 10:26 am
      Permalink

      Dear Doreen, I’m so sorry you feel invisible. :heart:
      I hope you can make it to your friend soon. I know it must be so hard for you. I think of you often since it is so bad for you.
      There have been so many times it was so hard to drag myself there. I always leave w/tears in my eyes, saying “Thank you & you have no idea how much this means to me.”

      Reply
  • September 6, 2010 at 11:45 am
    Permalink

    Thanks for sharing your hairdresser story. I really enjoyed reading it because I too LOVE going to mine. It’s a great thing that you(we) can go somewhere & just completely let down our hair (ha ha) & be ourselves!

    Reply
  • September 6, 2010 at 4:21 pm
    Permalink

    Kelly,
    I haven’t posted in awhile but I continue to read all the wonderful articles you write and many on the posts of others. It was good to read this about the hairdresser-mine is really great and unfortunately she has her own physical pain so she is well aware of mine. She always does her very best to make me feel better even when I really don’t. I am so blessed.
    Thank you for your continued hard work to bring us other warriors information and help.
    Kristi

    Reply
  • September 6, 2010 at 6:32 pm
    Permalink

    This is why one of my riding buddies and I get along so well. When he had colon cancer, I treated him just like I always had and didn’t act like anything was wrong, he has done the same for me with my RA. Randall understands what I am feeling perhaps more than any of my other friends, but still gives me crap everyday as though nothing is wrong. My last workday last week, I came into the pressroom and Randall asked me what was wrong. Nothing I replied. I know there is … you’re limping on the wrong leg. Are you hurting or just stupid and forgot which leg you’re trying to fake us with? LOL This is what I need, to just be treated like a regular person.

    I miss Tony Snow. By the way, I don’t have a hair dresser but after 7 years of MTX, I’m just happy to still have hair left.

    Reply
  • September 7, 2010 at 2:53 pm
    Permalink

    Loved this post and comments Kelly, so did my daughter who is a new hairstylist. It increased her awareness of how important the salon experience is to her clients. It has also shown her to be more mindful of her clients individual circumstances/conditions.
    She is my hairstylist, and has a natural gentle touch which I appreciate. She also knows how to cut my thinning hair to make it look it’s best without me having to style it after washing. She lives in San Diego, far away from me, so I’ve had to try a few stylists in town. Nobody could do it right like her even though I gave them many try’s and explanations. I’ll wait for her to visit now, or fly down to see her. If anyone needs and angel hairstylist in San Diego, let me know and I’ll hook you up.

    Reply
    • September 7, 2010 at 3:02 pm
      Permalink

      That is so awesome, Ronda. Give her an extra hug for me. :heart: I know you’re having a great time with her there!

      Reply
  • February 26, 2011 at 10:12 am
    Permalink

    My hairdresser is an angel too. She is the one who introduced me to bio.freeze. She massages my neck head and shoulders. She knows how hard it is to get ready AND go somewhere . I now have her home phone and she will come over and get me ‘ready’ Maybe the doctors could take a field trip to the hair solon! A little lesson in how to be gentle, yet effective.

    Reply
“imaware™
    Advertisement
Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.