Helping Others

How my “Health Challenge” helps others!

Working in the healthcare field, I come across many a soul who are far worse off than I am, or are they? Recently I changed career path and went down a road not well traveled, by me at least. I started doing Home Health Care (HHC). For many years I wouldn’t do HHC because of my phobia about cleanliness, yep I did say that. I just knew that I would be coming home every night cleaning my house, but you know it hasn’t been what I thought it would be. Now when I go into a home I see my patients and not how they live. I’m not judging them, actually, I was judging me because I always felt if my house wasn’t clean I could never have anyone over. I don’t know what I was thinking, I never have anyone come over! Enough about my dirty house.

pity partyWhen I started doing therapy in the homes I would listen as any good therapist does and then get on with my treatment sessions. I didn’t talk about my health or my problems until one day I was seeing a woman who had a myriad of problems but none that were life threatening or debilitating. She was very negative and continually told me I couldn’t help her. I begun to get so frustrated wondering “Why am I even here?” I sat down on the floor and looked at her, letting all the pain I felt internally show upon my face, because up until this time she had never seen me grimace let alone hear me cry out in pain.

She asked me what was wrong so I told her my story.

I told her about the last two years and how my life had come to an abrupt halt. How I lived in constant pain, couldn’t walk, sit, lay without yelling, screaming or crying. She never said a word, but listened intently. When I was finished I looked at her with tears in my eyes and told her that “I wish I had just one of her problems for if I did and not any of mine I would be jumping for joy every time I woke up.” After a few minutes I looked at her again and she said “I’m glad my health isn’t as bad as yours!”

After that day she did everything I put in front of her to do and in the end I discharged a much more healthier and happier person.

What was it that I said that made her change her mind about “her” life? She told me that she was being selfish and not looking at the bigger picture, that there are people out there a lot worse off than her. What she saw in me was a fighter and no matter what she was going to be like me!

Since that day I look at my job a little differently. Maybe I am doing what I am supposed to be doing because I can help images (1)these people. Don’t get me wrong I’m not out to fix the world because there are just some people you just can’t fix. But there are those who we can help just by telling them how we feel. You don’t have to have a disease to help others, you can just be empathetic.

This brings me to the “Invisible Disease” theory that we all know and love, and how we get others to believe in us. I have been fortunate that I haven’t undergone such criticism and no one has questioned my illness but other have and I truly feel for them. When I tell my story to these patients of course none of them have ever heard of Ankylosing Spondylitis but they listen and on other visits they always ask me how I’m feeling. So in a way the word is getting out about AS even if it is just in my own little world. But it makes me feel better that I get recognized for having something even if it is a “health condition”.

Last week I got a new patient with a head injury and luckily for her it is not as severe as it could have been. Again we went through the poor me and pity me stage until I hit my frustration point… “At least you have a recognizable disability” “People don’t just think all your injuries are in your head!” “How would you like to have an invisible disease where everyone thinks your just crazy and making things up?” Yep that did get her attention. “What do you mean invisible?”

Again I told my story and the look on her face was priceless. I honestly told her that I would rather have her head injury because if I did something people didn’t like I could say “Sorry I have a head injury!” but when I don’t get up and clean the house or go to town to get groceries it doesn’t go over to well when I say “Sorry my back/legs hurt!” People see your pain as real but my pain is just in my mind.

I’m still working with this patient and she is just super fantastic. She sees life in a whole different light now and is working to make changes and continues to make remarkable progress and hasn’t had the pity party since.

I think the more I tell my story to my patients the more they appreciate what they have got, and my experiences with AS are not nearly as bad as some have it.

So next time when someone you run into thinks that life has thrown them a shitty curve ball, tell em “Life could be worse, you could have mine.”


8 replies »

  1. Ya gr8 thought, I often feel this. Others try to calm themselves of their pain by lukg at my face. Well I just try to smile at everything that comes bcoz t theory is : mind can’t c t trouble it feels it & make it feel that all is well. So t pain will reduce…

  2. I worry that neither of these stories were an appropriate way to deal with a patient. In the first story, it seemed like you were doing the same thing doctors do to those of us with AS. “Come back when you have a real problem.” And the effect this could have had was to negate her perception of her problems. In the second story, your response sounded more like a passive aggressive blurt-out than a way to engage the patient.

    • Katie,
      I just got reamed by another reader but with your comment I felt I needed to say that I don’t treat my patients like doctors do, I have been there and would never do that. I care about my patients and what they are going through, and I will do what ever I can to help them. Sometimes I lie awake trying to figure out what I need to do to get them back on the right track. Is it right that when my frustration is raised I use my disease to compare with their pain and agony? Probably not but I’m human and they know and trust me to help them. I let them read this post and all the comments and they stated they were not offended so I should “delete” all the bad comments. So I may have a lapse in judgement every so often and sometimes, like this, it will bite me in the rear, but I will continue to try what ever I can to help my patients and to not be the type of healthcare provider who only wants to see the real “sick” people!

  3. My therapist reminds me “No comparisons” when I start saying how much better off I am than others. And it’s true, we can’t compare. However, we can choose to be vulnerable and reveal our truth- our hurt and our pain and I believe that enables others to share theirs.
    I think illness and pain can make people uncomfortable, so for the pain without an obvious cause we’d rather think it didn’t exist. I’ve had two bouts of acute CFS and a common response is that it’s all in your head. If only!
    People occasionally have said to me that I’m amazing, to which my response is that I have two choices- keep going and live or give up, lay down and die. It’s not an option really.
    And I agree with you, we need to talk about these conditions so that other people are able to share. After brain surgery a few years ago my sleep was utterly disrupted, until I demanded to be sedated and hospitalized. Well! Any mental illness the last thing to be acknowledged and talked about. I was amazed at the number of people in my workplace (not large) who confided in me about their anxiety and panic attacks.
    Bring on openness, honesty and of course courage, because it takes courage to be vulnerable and reveal our weaknesses and pain.

    Keep on! and keep writing about your pain because we all support you.

    • Thanks Kate,
      I know my methods of dealing with things are not the norm, but I feel with my heart and working with some people I FEEL can benefit from hearing what I have to say, I blurt things out. Being in healthcare I see so many that show no empathy towards others. I try and treat every one of my patients like I would my own family. Heck I worry about them just as much. I agree that sharing does help, not just you, but the ones you are sharing with. How are people supposed to know what we are going through if we hide it all inside? I’m glad you are doing well after your surgery and I wish you best of health!

  4. Dealing with AS, I know exactly what you are feeling. I have my flare ups where I spend most of my time on the couch. I can’t stand a pity party. If anyone deserves one, I think I would be justified but it doesn’t lessen the agony. When I encounter someone crying over nothing, sometimes I can’t help to share and tell them to count their blessings.

    • Thanks Ted, I needed to hear that. I too like the couch even though I know it causes me great pains to sit on it for too long. Everyday I wake up and look in the mirror and count my blessings.

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