The Stages of Chronic Illness

The following image is one that I developed originally on Powerpoint about some of the “stages” of chronic illness.  Click on the image to see a larger version – much easier to read!

The stages of chronic illness

My post today is kind of a generic post.  All chronic illnesses have a myriad of differences from one another.  And individuals experience their illness in unique ways that only they can truly feel.  But I do think most of us with a chronic illness can relate to this list.

  • Persistent pain

Whatever the symptom (most often it is some kind of pain), a chronic illness has to start somewhere.  Maybe it’s a pain that you feel and know it’s there but it doesn’t really bother you all that much.  Maybe when you try to describe it to your doctor, it is brushed off as “just part of life” or “a sign you’re getting older”.  Maybe you have been sick but you have recovered but there is some lingering problem.  The illness progresses.  It gets worse.  You begin to have a hard time dealing with it.

  • Stress, anxiety, tension

You begin to stress about it.  You become tense and anxious.  You know it’s something that should be taken care of but maybe your doctor and friends still tell you it’s nothing to worry about.  But you feel it getting worse.  It hurts more.  It spreads.  You know you are getting sick.  How do you deal with it?

  • Medication

Now is the time your doctor may prescribe something for you.  But it’s probably a drug to deal with your “anxiety”.  You know that you are really not being taken seriously.  Maybe your friends and doctors just think that what you are now dealing with is caused by your worry over that other illness.  But what is really wrong is not yet being treated.  And deep down you know it.

  • Avoiding friends and family

You don’t feel well.  You hurt.  You think that you’re not “good company” for your friends and family.  Maybe you just don’t feel like going to that big family dinner.  You know you just don’t have the energy to play games with everyone like you used to do.  Maybe you played sports with your friends.  Your pain and perhaps your fatigue make it more difficult and less fun than it used to be.  So you avoid those things because they don’t make you happy any more.

  • Time off work

Whatever is wrong is now affecting you at work.  You don’t feel well.  You are tired.  You hurt.  Your brain is not as sharp as it used to be.  So, you wake up in the morning and don’t want to get of bed.  You pick up the phone and call in sick.  At first, it is infrequent but as time goes on, it happens more and more often.

  • Negative thinking

Now you don’t feel well, you have been avoiding doing the things you like to do best, and whatever is wrong is affecting your work.  You begin to harbor negative thoughts.  And this negative thinking only makes things worse.  You don’t have a diagnosis.  You feel your life is changing and not for the better.  You begin to feel lost.

  • Weight gain or loss

All of this anxiety and negative thinking may trigger bad habits.  Maybe you begin to overeat because of the stress.  Or maybe you begin to miss meals because it’s hard to be with other people when they don’t understand what is wrong.

  • Sleep problems

On top of it all, now you can’t sleep.  Maybe it’s because of worry or not being able to get those “negative thoughts” out of your head.  After all, they are beginning to talk about all those sick days you have to take.  Or maybe it’s the pain.  That awful nagging, gnawing pain that won’t go away.  If you get to sleep, you only wake up in the middle of the night and you just can’t get back to sleep.  You toss and turn.

  • More medication

You tell the doctor you can’t sleep.  Maybe you also tell him about your pain and other symptoms that seem to only be getting worse.  He prescribes something to help you sleep.  Maybe it helps, maybe it doesn’t.  Maybe you get a medicine for pain, but if so, it’s usually only something generic.  And, often the sleep aid and the pain medicine may only be anti-depressants for that “invisible illness” you have.

  • Loss of work

At some point, you are no longer able to work.  Sometimes this point in time comes sooner and sometimes it comes much later on.  And sometimes you get to make the choice and sometimes the choice is made for you.

  • Anger, fear and frustration

You are angry and frustrated.  What is wrong has changed your life.  A “new normal” seems to be defining your life and you don’t like it.  You are afraid.  Part of that fear comes from the unknown.  You may still not yet have any diagnosis.  And what is wrong is only getting worse.

  • Depression

All of that anger, all of those frustrations and all of that fear work on you.  Now when you can’t get out of bed in the morning, it’s not just the pain and fatigue, it’s something else.  It’s a dark feeling.  It’s strange.  It possesses you and won’t let go.  You can’t “shake it off”.  Nothing seems to bring you joy.

  • More medication

Back to the doctor.  You try to explain what is wrong.  It’s hard to do.  You are prescribed one or more anti-depressants and maybe something else to try to “lift your mood”.  You want to scream that if you could just understand what is wrong with yourself, it would be better.  If the enemy were known, it would be easier to fight.  But, you take your medicines and carry on.

  • Weak muscles

Your muscles start to feel weak.  Maybe you notice it when you have trouble lifting something you lift almost every day.  Maybe it’s a little harder to reach that top shelf.  Maybe you have started dropping things.  People are saying it’s because you haven’t been “exercising” and that “you need to get out of the house more”.  Perhaps it’s the inactivity but also it may be because whatever is causing your pain is getting worse.

  • Loss of fitness

Because you can’t be active, you are losing your physical fitness.   It is harder and harder to just get through the day.  You fatigue easily.  Maybe it’s the inactivity.  It certainly is contributing.   But you are also sick.  Why can’t everyone see it?

  • Physical therapy

You complain to your doctor about how you feel.  You hurt.  You’re tired.  You can’t do what you used to do.  The doctor recommends some physical therapy to get you started rehabilitating your “debility” and gives you a prescription. You’re told that when you become more active, you will start to feel better.  Then, you can join a gym and follow a regular exercise program.  In your heart, you know this probably won’t help but most of us are “troopers” and do our best.

  • Exercise intolerance

After you give it your best effort, it becomes evident that exercise is not the answer.  At least not in the traditional sense.  You find that trying to do a regular exercise program only causes you to “flare up” with excruciating pain and overwhelming fatigue that might take days for recovery.  Or maybe you also have some autonomic dysfunction that creates problems with your heart or lungs.  If exercise is the answer, it will have to be significantly modified so that you are able to do it without making things worse.

  • Loss of stamina

You are becoming truly debilitated because of your illness.  You get tired very easily.  But the kind of overwhelming fatigue that you feel is so much more than just being tired.  It is so hard to explain.  But it is something that you have never experienced in your life.  Why can’t everyone understand?

  • More medication

Your constant complaining gets the doctor to prescribe more medicine.  Maybe it’s for pain.  Maybe it’s to try to give you more energy.  Maybe your anti-depressant is changed.  Lab tests are done.  Maybe something is mildly abnormal, but any medicine doesn’t help what is really wrong.  You stay on that “treadmill to nowhere”.

  • Isolation

No one seems to understand what you are going through.  You are weak and depressed.  You hurt so badly and are so tired that it’s hard to make any movement at all.  You isolate yourself.  You don’t want anyone to see you like you have become.  You do less and less.  And, you feel guilty.  But the isolation only makes things worse.  You need socialization.  You need support.   You need those closest to you nearby.

  • Insomnia

You only thought you had sleep problems before.  Now you can’t sleep at all.   You are tired all day and can’t sleep all night.  The lack of sleep makes you hurt even more.  It makes it even harder to try put on an act that “you are fine” and that “you can handle it”.   You need help.

  • Inactivity

Now you don’t do anything at all.  You have made yourself isolated.  You are likely depressed.  Your pain and fatigue are too much to bear.  So you just bring up the covers on the bed and hide from the world.  But this won’t make anything better.  There are people who want to help.  Let them help.

  •  Neverending chronic pain and fatigue

Hopefully, you have now decided to advocate for yourself.  You have reached out to those who love you.  You find a doctor or doctors who understand what is wrong.  You get a diagnosis.  Maybe there is a real treatment plan.  But you find that even when you know what is wrong, the “new normal” is not going away.  You have to adjust your life to your illness.  It’s hard to do.  But when you accept the fact that you will likely never be as you once were, you begin to take charge, to be in control of your chronic illness.  Up to this point, your chronic disease has controlled you.  It has taken you on a long and painful ride of pain, fatigue, and feelings that you don’t want to have.  Now you can be in charge.  It still hurts.  You still have those days when you just can’t do much at all.  But you spend time with your friends.  You do what you can.  You stay active in a way that keeps you in control without causing you even more problems.  You are a fighter.  You are a warrior.  You never give up!

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About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome.
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9 Responses to The Stages of Chronic Illness

  1. Jill says:

    Very good article. Thank you for your contributions. It’s interesting that one can find the stages of “Late Lyme Disease”, but not the final, end stage. I guess we all are dying of opportunistic and gradual decline.

    Liked by 1 person

    • mcreyscope says:

      Thank you for your kind comments. Yes, I agree that we are all dying in the form of some kind of gradual decline. It is the slope of that decline that may differ from one person to the next.

      Like

  2. Pingback: Top Facebook Posts in December 2014 for McReyscope’s Musings on Chronic Illness | mcreyscope's musings on chronic illness

  3. Thank you so much for this. I have autoimmune hypothyroidism: Hashimoto’s disease. I went through all of the stage of grief once I got a real diagnosis … which took more than a decade, as it turned out, with many an “it’s all in your head” along the way. Once I came out the other side, I literally said aloud, “I have this disease, but I don’t have to let it have me.” That was the beginning of that “new normal” phase that you talk about at the end. I’ve shared this article on my Facebook page.

    Like

    • mcreyscope says:

      Thank you very much for your kind comments. And thank you for sharing the article. It helps me so much to know that what I write on my blog and what I share on my own Facebook page is helpful to others. The “new normal” is a hard reality but one that we with chronic illness must accept.

      Like

  4. Deb says:

    Hi David…I am a survivor of Lymphoma, Paraneoplastic syndrome, and I also have Hypogammaglobulinemia…I recieve IVIG every 3 weeks…it sucks…but I prefer to not think of myself as having an illness, I tell people when they ask that I have chronic conditions…I am enjoying reading your posts…

    Like

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