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Tips for How to Respond to Chronic Illness

I’ve briefly mentioned my health problems, but it’s time for a full disclosure.  Since I was 13, my white blood cell count has been abnormally low (and when we discovered this problem, my white count was lower than that of a chemo patient, though it has risen a little since then).  The doctors called this condition “Benign Neutropenia”, meaning that it hasn’t developed into a disease like lupus, for which I’m incredibly thankful.  But the condition makes me constantly tired and makes it hard for my body to fight infection.  I also have Restless Legs Syndrome, which means my legs have to move to be comfortable; if I hold them still, my entire body gets restless.  This problem turns severe at night, and I don’t sleep well (case in point: I drafted this post at 4:50 a.m. after maybe 5 hours of sleep).  And recently, I re-developed asthma; if I lie flat in bed, I start wheezing in an hour (or less).  So I sleep propped up, which makes it even harder to rest and also creates back pain.

I’ve had Neutropenia for over 10 years, the restless legs for almost 10 years, and asthma for about half a year (though it feels longer).  Being chronically ill really has affected my mindset, my perception of myself, my dreams, my abilities, much of my life—but it doesn’t control my entire life.  And I’ve learned a good deal about responding to this situation.

Tips for People Suffering Chronic Illness:

  • Don’t be Eeyore. It is devastating to live with a condition that is, quite literally, destroying your body from within—but there are always little blessings and successes in your life along with the difficulties.  Develop the habit of noticing them and remembering them—maybe write them down on pretty notepaper and stick the paper where you can see it.  Or start a Pinterest board or make a list in a journal.  Nobody likes to be around Eeyore, and that attitude won’t fix your problems.  If anything, it will make you feel worse—and the truth is, no matter how difficult your day is, there will be blessings and little joys throughout.  Try to cultivate some cheerfulness.
  • There is a line between complaining and confiding. Where is this line?  I’m still figuring that out.  A lot may depend on the person you’re talking to; some of your friends may be more compassionate than others.  But having a chronic illness does not mean that you can stop considering other people’s feelings.  Be careful not to whine, and when in doubt, just keep quiet (unless of course, you have a true medical need!).
  • Take “advice” politely. Some folks will hear of your medical problems and offer a solution they heard from a brother’s sister-in-law’s aunt’s cousin, who had the same condition.  Or they’ll ask those “have you tried this?” questions.  It’s hard to listen politely to this (especially since, yes, you’ve probably tried that, and also tried different medicines, exercises, dietary restrictions, and unconventional health cures in desperation).  But those advisors mean well.  They really, really do.  Take the advice with good grace.
  • Be discreet about your symptoms. Chances are, you have more than one health problem and/or multiple symptoms.  But you don’t need to list them all when people inquire after your health (unless the person is a close friend and genuinely wants to know).  A simple, “I’m tired today,” or “I’ve had a hard week, but I’m making it,” will suffice.  Also, don’t constantly talk about your symptoms to your close and trusted friends.  I’m sure you have passions and interests and hobbies you can discuss as well.
  • Be gracious toward your friends’ struggles. If a friend had a restless night, or suffers physical pain for a few days, or experiences any symptom you have—resist the temptation to say, “Now you know how I feel.”  You of all people should know how damaging thoughtless remarks are.  Yes, your friend got a taste of what you suffer, and if they’re wise, they’ll recognize this.  But it’s not your job to point that out.  Just say, “I’m sorry,” and ask what you can do to help.
  • Listen to constructive criticism. Just because you have a chronic illness doesn’t mean you’re off the hook for personal responsibility.  If a close and trusted friend mentions that you’re complaining, or being Eeyore, or showing any other attitude problem—listen to the criticism.  It’s hard.  It may feel like one more problem to fight through or one further flaw that defines you.  You can’t control your illness.  But you can control your attitude and actions.
  • Become more compassionate. You’re not the only one fighting daily battles.  Maybe yours are worse than a healthy person’s, but pain is pain.  Since you know how hard it is to live with, put your experience to good use and encourage other people through their struggles.  Ask how they’re feeling, check on them, listen to them, share tips you’ve learned to help you get through difficulties.  Just don’t make the whole conversation about yourself (e.g. “When I’m struggling yet again, here’s what I’ve found to help me push through despite how I’m feeling…”)  And don’t encourage just because you want others to do the same thing for you.  Let your pain teach you to care–and then genuinely help others.
  • Focus on what you can do.   Your illness will hold you back in many ways, but there will be things you can accomplish.  This sometimes feels like an uphill battle: for every chore you finish or social situation you attend, you might forsake three others.  But one success is better than none.  This is a hard mindset to cultivate, especially if you (like me) are a type-A person with an overdeveloped sense of duty and responsibility.  But the truth is, there is always something you can accomplish, be it texting a friend to encourage them, cleaning up your room, or getting through that social situation with a smile.
  • Don’t constantly use your friends as a hanky. It’s hard for others to understand what you’re going through if they’ve never experienced it, and the compassionate friends who are willing to listen are absolute treasures.  But don’t take them for granted, and don’t be always crying on their shoulders.  Encourage them, and listen to them, and help them out when they need it—after all, you know how hard life gets, don’t you?
  • Truly appreciate your friends. I cannot stress this enough: don’t take your friends for granted.  When they give you their time and energy and compassion, that’s an amazing gift.  And they may feel incredibly helpless that they can’t do more for you.  Tell them you appreciate their kindness, compassion, and support.  Also don’t abuse their graciousness; if they check on you or ask how you feel, be honest, but look on the bright side as well (e.g. “I had a bad night, but I’m in a good mood at the moment!”).
  • Cultivate a sense of humor. Without it, you’ll fold up into a useless, whining lump and probably miss many of the small blessings in every day.  A sense of humor can turn those long doctor’s appointments and wrecked schedules into a hilarious anecdote that amuses you along with everyone else; for a personal example, see this post.  A sense of humor will offer a nice reality check–life is not all gloom, doom, and chitauri–and it will help you feel better.  🙂

Maybe, however, you’re not chronically ill, but you know someone who is.  And you have no idea how to interact with them–you’re annoyed to the point of slamming a chair through the window, or maybe don’t want to hurt their feelings, or at least want some insight on what they’re dealing with.  So here’s what you can do:

Tips for Friends of Chronically Ill People:

  • They may not always be “fine”. Oh, they’ll say they are to avoid complaining or to avoid the criticism and disapproval that will inevitably follow every time they say they’re not  And maybe they’re having a better day than usual—but they may not always be fine.  Recognize this, and let the person know that you’re willing to hear the truth.  This can be tricky, because many chronically ill people don’t want to be coddled and treated like they can’t persevere, but they will appreciate someone willing to hear that, despite their smile, they’re having a hard day.  You could say something like, “I heard you’re dealing with X health problem—how are you feeling today?”  This will be an incredible encouragement.
  • Don’t give medical advice. Especially unsolicited advice.  You’re trying to help, but chances are, your friend has seen several doctors, takes several prescription drugs (that may have nasty side effects), exercises when possible, sticks to dietary restrictions, researches their condition, and tries homeopathic remedies.  Your medical advice is probably not new, and chances are, it’s more annoying than helpful.  (The exception is if you’re a close friend, you’ve researched the condition as well, and/or you’re a doctor or nurse.
  • Don’t gossip about their illness. This should go without saying, but spilling the juicy details of their health problems—even if you’re trying to raise awareness—violates your friend’s trust.  Maybe he/she doesn’t want others to know or maybe would prefer to disclose that information themselves.  If someone is mouthing off about how tired your friend always is, then you can say something general like, “Well, constant pain makes it tough.”  (Or sleep deprivation or whatever the symptom is.)  But talking about chronically ill behind their back makes them a subject of gossip; and chances are–despite good intentions of raising awareness–you won’t make anyone truly understand what your friend deals with.
  • Treat them like normal people.  There’s no need to walk on eggshells or automatically assume they won’t be able to meet the deadline, join you for lunch, or hang out on the weekend.  Chronically ill people won’t appreciate being sentimentally pitied or fussed over as though they can’t take care of themselves.  If you sense they’re struggling, ask if they’re okay and if you can do anything to help.  Otherwise, don’t act like their illness is their personality.
  • Be compassionate. Chronically ill people face disapproval for a condition they literally cannot control.  They’ll be asked why they didn’t come to the Christmas party—again—or why they can’t make it to the evening church service, why they frequently reschedule get-togethers, why they’re not more cheerful, why they’re always tired, why their medicine isn’t working, and so on.  Chronically ill people often cannot accomplish simple activities without exhaustion and pain.  That really messes with their minds, their emotions, and their perceptions of themselves.  As such,  try to be patient with the ups and downs.  You’ll get tired of hearing that your friend is exhausted, has to reschedule plans, suffers yet another side effect from medication—but guess what?  Your friend lives with the problem.  And you would not believe the embarrassment and discouragement that comes with being constantly tired and unable to fulfill obligations.  Any time you have a bad night or experience one of their symptoms, imagine living with it every day, and see how fast your perspective changes.  Sympathy and patience go a long way in encouraging them and helping them persevere.  But on the other hand…
  • Gently give constructive criticism. If you’re a close a trusted friend, you owe it them to kindly point out attitude problems and character flaws.  Chronic illness does not relieve them of responsibility to become better people, and you’re not “a good friend” to ignore attitude problems.  Just be gentle about how you point out flaws, because the information can feel like yet another battle the sick person has to fight.
  • Encourage them. Chronically ill people fight physical, mental, and emotional battles every day.  Not only do they struggle with symptoms, they may question their worth because they can’t do what a healthy person can.  They may be embarrassed by constantly re-scheduling social appointments or having to decline altogether.  They may feel that they’re constantly failing.  And they will be incredibly discouraged that they can’t fulfill their hopes and dreams.  To top it off, they have to wear a mask in public, to appear more cheerful and energetic then they really are, out of consideration for others and/or because others just won’t understand.  Their illness affects their whole lives, and they may lose sight of their strengths and successes.  Remind them of what they can do and how well they’ve managed, how strong they are, how kind, funny, whatever.  This will be a huge encouragement.
  • Ask what you can do to help. It’s hard to know whether your efforts are helpful: if your advice is perfect or annoying (especially if they take it in good grace); whether going out to lunch would be fun or exhausting; whether taking on their workload is a relief or an insult.  But if you don’t know, just ask.  Something as simple as, “What can I do to help?” is great.
  • Listen to them. This is the most encouraging and compassionate thing you can do.  Maybe you have no idea what your friend is experiencing, but guess what?—you’ll find out if you listen.  And truly listen; not give advice, not point out that it could be worse (yes, it could, but chronic illness is hard)–just listen.  Sometimes, all your friend needs is to cry and confide for a while.  Living with chronic illness can feel like a losing battle, but it will be an incredible comfort if your friend knows you genuinely care, not just about about their physical well-being, but their emotional well-being.

If you readers have any tips to add, feel free to mention them in the comments!  And if you notice that my posts could have been penned by Eeyore, or that I mention difficulties more than humor or blessings–please let me know.  🙂