5 Things You Should Never Say to a Person with Chronic Illness (i.e., Lyme Disease)

I’m often grieved when I hear about how some family members and friends treat their loved ones with Lyme disease, or other “invisible” chronic illnesses. They don’t mean to be insensitive, but along with Lyme disease and other invisible chronic illnesses, comes a lot of unbelief by family members about just how much pain the person with illness is going through. I guess because, unlike a cancer patient, you can’t see their body wasting away from illness, or dark circles fringing their eyes, and they may act relatively normal- so it’s hard to believe that they are really THAT sick.

In their efforts to be helpful, they may unintentionally say things that make the afflicted one feel even worse.  If you are one of those well-meaning friends or family members who doesn’t quite know what to say or do to help your loved one- I’d like to share a few tips about what to not say or do…followed by what you could say or do that would help them to feel better!

Do not say…

1) “But you look so good!” Yes, people with chronic illness often look quite normal, or even fantastic and trim, due to the extra pounds that disease often melts from their frame, due to malabsorption and other metabolic factors. But the problem with this statement is that the sufferer doesn’t see it as a compliment, but rather, a statement of disbelief about how much they are actually hurting, since, if they look so great, they couldn’t possibly be that sick. A more helpful suggestion? You could say, “Wow, it’s amazing you look so good, considering how terrible you must feel inside.” A person with Lyme disease has MS-like brain lesions, damaged organs- including the heart, liver and kidneys; a torn-up gastrointestinal tract, broken-down connective tissue, toxic cells, and severe malnutrition- no matter what they look like on the outside. Really.  Not to mention lots of bugs…

2) “You might feel better if you just exercised (or fill in the blank) more.”  People with chronic illnesses such as Lyme disease cannot exercise (or work) and reap the same benefits from exercise as a healthy person, due to metabolic problems and a lack of cellular energy and properly functioning mitochondria, among other reasons. A day out jogging could land them in bed for a week. No, this is not a good thing.  It may be difficult for you to understand your loved one’s limitations and struggles- no matter how compassionate or sympathetic you might be- so rather than assume that you know best how to help them, it’s better to say something like, “I’m sorry you are going through this. I’d love to hear more about how this disease affects you, and find out if there’s anything I might be able to do to help.”

3) But don’t just say….”Is there anything I can do for you?”  This is a wonderful sentiment, but the question is too generic and when asked such a question, your sick loved one, not wanting to burden you, will likely pause, and then say No.  In our “pull yourself up by your own bootstraps”society, it’s hard for people to say Yes when offered help, and even if they are inclined to say Yes, they won’t know what to ask you for, because they don’t know what YOUR limitations are, and they don’t want to oblige you to do too much for them. I think that’s how most of us are, anyway.  So if you want to help them, say such things as: “I’d really like to help you. Could I come over this week and clean your house for you? Could I buy you some groceries?” Insist! “Are you able to pay for your treatments and basic needs? If not, I’d love to send you some money.”  Insist! If they look sad or depressed, say, “It seems like you are going through a lot right now.  Would you like to talk? Or, can I just sit with you for awhile or pray for you? Would you like to watch a movie together at home?” And then emphasize how much you would LOVE to do this for them- as if it were a privilege or a blessing to be able to help them- not an obligation or burden.

4) “Just think more positive.”  Trust me, if people with chronic illness could do this, many of them would. Their lives are plagued by day-in, day-out symptoms that sometimes make their existence feel like sheer hell.  It is a noble thing to want to think more positively, but when your biochemistry is a mess, you don’t sleep for nights, are in extreme pain, or have pathogens pooping on your neurons, it’s hard to be positive. Never mind find joy in a life of isolation and non-functionality.  I believe that God can help us to have more positive thoughts, but apart from God, and in our own human effort, and especially when chronically ill, it’s difficult to achieve. Seek instead to empathize with your loved one. If they tell you they are depressed, say “Wow, I’m so sorry. It must be so hard to keep on going, day after day, and function, with such difficult symptoms. It makes me sad to hear of your suffering. Tell me more about what it’s like to go through this on a day to day basis.” And then-  “Can I pray with you, take you to see a funny movie (or for a drive to the mountains, etc..) or do something that might cheer you a little? Would you like to talk? Would you like a hug?”

5) “I already told you that last week. Don’t you remember?”  Chronic illness will often make your loved ones spacey and forgetful. Their cognitive functions- memory, ability to process information, remember dates, names and locations- and respond effectively to you- may be compromised. So when it seems like they aren’t listening to you, and they go all ADD on you or act like they don’t remember what you told them last week, it may not be because they aren’t interested in you or are trying to be disrespectful and forget your appointments with them- they just can’t remember or “stay with it” all the time.

If you say things like, “Don’t you remember?” or “As I already told you…” and/or act annoyed when they can’t remember your friend’s name, or where you were supposed to meet for dinner- they might feel stupid and condemned.  Instead, make things as easy as possible for them by not telling them detailed stories, or expecting them to remember dates, names, and events- or to give you their full attention at all times. This one is tricky, because often, the things that loved ones expect to be easy for the sick person, are not, and the things that are easier for the sick person to do, the loved ones doesn’t expect to be easy (and so they assume the person isn’t as sick as they say!).

By following these guidelines, you will help to make your loved one’s journey toward wellness softer and easier, and help them to feel understood and loved in the process.