The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

“You Must Be Feeling Better” Uh… No…

ill-let-you-know-whe-am-feeling-betterI’m being hard to please. I admit it. I don’t know what I want, but I somehow desire other people to figure it out, when even I can’t.

The truth of the situation is that I have been off of my main medication for rheumatoid arthritis since August 2008. I’ve never been off of this classification of medication since I began it about eight years ago. I had to go off of it due to an infection last fall, and between my high risk for infection and need to have hand surgery I’ve not been able to take it (And I haven’t been able to have surgery due to edema, etc.)

The result is that every day gets worse. Literally. That’s not being pessimistic, it is just my reality right now. My rheumatologist has put me on a medication that people took for RA 60 years ago so I could feel like I was “doing something.” But it’s one of those medications that takes months to kick in, and it’s also raising my danger zone for my liver, so I don’t know how long I can keep taking it. Monthly lab tests will tell.

So I am on about 20 different medications from anti-inflammatories to pain killers, steroids to medications to try to help me sleep, control blood pressure, etc.

If that is the situation, what is my reaction?

Last week was a bad week physically–the worst it had been up until that point. I moaned about it a bit. I’m sick of it!

My Twitters and Facebook postings had people writing me back saying, “Praying for you.” “Hope you feel better soon.” I appreciated it.  I explained to my husband one night I didn’t think he realized just how bad each day had been and he listened patiently with sympathy.

flair-im-chosing-joyBut this week he has had to work 15-hour-days every day on a project that is due. We are so blessed that he has a job (and hence, my health insurance) that I can’t and won’t complain for a moment about that. But has it been harder being on my own each day, all day and evening with just me and Josh? Sure. I’ve gotten Josh to bed an hour earlier each night by 8:15 or so and I’ve quickly followed, asleep by 9 p.m.

I haven’t even wanted to post “updates” this week, because I’m even sick of hearing myself whine. But my knees haven’t been able to unbend for days. I walk hunched over and hold onto walls, furniture and cars. I’ve tried to not give into it and still make it a fun week for Josh. We’ve made cookies, played Play Doh, watched a movie, gone to McDonald’s, karate, and hav had 3 play dates. Tonight is the Variety Show at his school and we’re attending. I’ve pushed through and have made it.

So why do I feel a sting when people write kind comments to me that say, “I see you’re posting on the list so you must be feeling all better! I’m so glad!” or “Are you feeling better this week?”

I want to say “No! I am NOT feeling better! I won’t feel better! Every week is going to get worse until I am healed up from a surgery that isn’t even scheduled yet.”

Yes, I am posting to some lists. I am trying to work to keep my mind off of things and then other times I am too exhausted to think straight and I just walk away from the computer. But I feel awful.

I feel badly I’ve not answered people who have kindly asked if I am better? I don’t want to say, “No, and I won’t, thanks, for awhile.” I don’t feel like being cheerful and saying, “I am hanging in there.” I don’t know how to be honest.

When my friend called and asked how I was I said, “Uh… I’m doing okay.” She said, “Just okay?” and I said, “Well, I know I’m sick of saying I’m not doing great and you’re probably sick of hearing it, so I don’t know… Lately I’ve been stealing my friend Pam Farrell’s saying… ‘I’m choosing joy!'”

Something as simple as “how are you?” shouldn’t caused such mixed emotions, right? After 15 years of chronic illness, I should be past it causing any emotions at all. But even as I write emails to people who I know are chronically ill I hesitate as to what to say. Do I say, “I hope you are feeling better”? Or do I say, “Unless you let me know otherwise, I’ll assume you are still having a lot of pain”?

We have a 50% chance of getting it right. When we are right, the person in pain gets a moment of  “ahhh” –like getting into a hot tub. The sting of pain is taken away for just a few minutes. When we get it wrong, it’s a sting that is more like wading into the cold ocean waters.

What are your feelings? Experiences? While I am waiting I guess I will go update my Twitter. I’m still deciding to be honest (and boring) or “joyful” and upbeat.
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10 Comments»

  Sharon wrote @

Lisa,
Thanks for this. This is timely. I had my quarterly visit with my neuro and we discussed how it’s unlikely that I will improve. In fact, I am progressing. The sad thing is we don’t even know exactly what I have. The best guess is a neuromuscular disease of some sort. I, too, don’t know how to respond to people. I also don’t know how much to share. For example, it’s easier for me to post a note on Facebook about my condition rather than calling everyone. But, I don’t want to appear to be a whiner, or just out for attention. You are right about the complicated emotions.

  Sher wrote @

Hi Lisa,
I found your blog in my Google Alerts and so came by to visit. Thanks for writing this post and sharing your insights and thoughts on dealing with the “you must be feeling better…” situations that come up. It’s such a delicate tightrope walk when you have a chronic illness…and for our family and friends. How do we properly handle these situations when they arise? I certainly don’t know…except that we can only deal with them one situation at a time…and being honest, without negativity, is probably the best way…like you’re doing here.

Even after 15 years it seems that it would be normal to still have emotional reactions to our illness. After the initial diagnosis, we come to terms and acceptance with our illness over time…and things seem to settle out for a while…but when a major incident with our chronic illness occurs how can we help but be emotional about it? That’s a normal human reaction–even after coming to terms and acceptance. It doesn’t mean that you’re not coping…it just means that the situation is currently overwhelming….and you’re trying to “find your feet” again with the new development in your illness.

Sometimes it seems that we have to go through many waves or instances of coming to terms and acceptance with chronic illness. Each time is a little bit different from the last…and each time, we have a chance to learn more about ourselves and have the possibility to gain an inner spiritual strength, even when our bodies are experiencing a new episode/level with our chronic illness.

I really admire you and your work…and how you’re coping. I live with chronic illness, too, but not the kind you have. I can only imagine what you have to deal with.

Hang in there…and know you’ve got some readers who are keeping you in their thoughts and prayers.

Sher :0)

  Ada wrote @

Dearest Lisa –

You have summed up my innermost feelings to the max! So often people have ‘good intentions’, at least I think they do, when they write notes, letters and send pictures, but quite often they can be disheartening more than uplifting … especially if we are having a bad day already. I know for myself, there are days when I will avoid even coming to my page at all just to avoid seeing if there are any messages there as I do not want to hear or see anything that anyone has to say, and quite frankly, I don’t have anything good to say to anyone. Is that being un-christian … I don’t think so, just being honest. Some people just don’t get it, even when they deal with chronic illness themselves, just because perhaps theirs has been brought under control with mediations or treatments. While I am happy for them, this can cause a sour attitude within my spirit by times, as I have not had the same results for myself. I have fought my illness since 1998; I have faith in God; I have prayed; I have tried to be strong for others, etc. So why do my prayers seemingly go unanswered when I am asking for relief for MY pain?

Lisa, to some degree I understand where you are even though our illness are different.

What the solution is? I guess just trying to remain honest. Honest with yourself, honest before God, and honest with others. If they don’t get it … there is not much we can do to make they get it except tell them the truth in love, and if they choose to listen, OK. If not, then let them go. Is that easy – no. But better to lose a thorn in the flesh honestly, than keep a thorn through deceit, whether intentionally or not.

Physicians seem to be getting less open to new treatments and meds anymore after they have been seeing a chronic pain patient for any length of time. It is like we are written off as “abusers” or they do not want to hear what we have to say as they are “too busy” with patients they can make money off of. The chronic patients are too complicated for them to figure out as there seems to be no end result for them to see and they do not want to work on this condition for that reason. It is a “no reward” propaganda for them.

I could keep going expressing a lot of thoughts on this subject, but don’t want to bore you in one setting my dear. Just know that you I understand where you are coming from – and empathize totally. Anytime you need a shoulder, drop me a line, privately if you wish.

You remain in my prayers always,
Ada

  Ker wrote @

It’s good to know I’m not alone. I really have withdrawn from the few people that are in my life because one of them said “oh, you’re sick AGAIN”. I made the mistake of thinking she really wanted an answer to “How are you?” I’m sick of letting my family down, I’m sick of being sick. It’s not that I don’t want someone’s idea of a great life. I’m doing the best I can with where I am right now. Some days I feel positive and find my joy in the midst of it all but sometimes it’s just hard put on that brave face. Thanks for your honesty.


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