I always get asked if there’s anything someone can do to help me in my life with lupus. My usual answer is, other than finding a cure for lupus, no. But recently people have been extremely thoughtful, and have helped me in many ways I'd never even considered. So I thought I’d open up the question to an online lupus community: what can people do that helps you? I’ve been at times surprised and at times in violent agreement with the responses I’ve received. I also suspect that this will be an ongoing discussion; I certainly hope so. I also know other such lists have been published. But in the meantime, here are some suggestions for how to help a chronically ill patient in your life:
- Learn about the disease. Nothing is more frustrating than being asked if, for example, I “still” have lupus? It shows a total ignorance of the chronic nature of my disease. I recommend the Mayo Clinic and NCBI for their brief, accessible and clear descriptions of most diseases. And, of course, there’s always a simple google search. It means a lot to patients if their friends know at least the basics about their disease(s).
- Do not assume that a patient who takes pain medication is an addict. Not every patient has to take prescription pain meds, but some do. And they take them for the right reason: to bring overwhelming pain down to a point at which the patient can function. Many patients would otherwise spend all day either in the hospital or curled up in a ball of agony on their couches. That is not addiction; it is a necessary treatment for a serious medical condition.
- Soft massages/back rubs. Deep massages sound relaxing, calming, and in some situations, sexy. They are none of those things to a person whose body is screaming in pain. A soft, gentle massage, on the other hand, is wonderful. Depending on your relationship with the patient, either giving a gentle massage yourself, or giving a coupon for a massage therapist who specializes in chronic pain would be very, very, welcome.
- Gift certificates for manicures/pedicures: obviously only for more girly women (or men), these can be a fun way to take our minds off of our everyday problems.
- I try to keep this blog family-friendly, but I want to add that the advice about massages also applies to any other intimate contacts. Communication, of course, is key, but keep in mind that your partner is in always in a great deal of pain.
- Easily frozen meals: especially for patients with kids, this can feel like a Godsend. Lasagna, casseroles, ravioli, whatever. When a patient is too spacey and in pain to make a cup of tea, not having to make a meal is a true blessing. Important caveat: autoimmune diseases go in groups, and they are often accompanied by food allergies. Bringing a pasta dish to a patient allergic to wheat is sweet, but not as helpful as you might wish.
- Drop off ice-cream or other treat (keeping in mind allergies). Very few patients will ask a friend to go to the store and pick up a half-gallon of ice-cream, but most love it when someone does so!
- Don’t criticize us when we are unable to do something. Most of us would give an arm, leg, and three fingers to switch places with a healthy person and be able to do all the things expected of us. We don’t “flake out” so much as pass out. Literally, at times. Please remember that we’re sleep-deprived, in a brain-fog and in pain. Always.
- Listen. Most of us try to hide our disease(s) as much as possible. If we’re trying to explain something about our life or illness to you, you should take it as a compliment. It means we care enough about you to try to make you understand our perspective.
- Be compassionate. Unless you have our disease(s), you don’t know what we live with. Please don’t say you do. Instead, try to understand how it would feel to be in our shoes, and how hard our lives are. We literally live one day at a time during a flare. Please understand that this is by no means a choice of ours.
- Don’t assume that if we look great, we feel great. For many of us, the opposite is true. Personally, the worse I feel, the more I do to hide my illness. If I have perfect "hair," perfectly matching accessories and a cute outfit, it may well mean I am really sick. Outfits, accessories, etc. are some of the very few things we can control. So as our body goes out of control, some of us try to exert control over anything else we can.
- Don’t blame our feeling awful on overwork, stress, etc. We may be sleeping 16-18 hours a day, and still feel like road-kill. Old road-kill. We do not “just need to relax,” “take a vacation,” etc. We’re sick no matter what we do.
- For patients with kids, offer childcare so a patient can have some time to him/herself.
- Offers of rides to appointments/home from the ER. I’ve had to call on friends for this kind of thing at all hours. Sitting in the ER knowing I have friends on whom I can totally depend to pick me up is an incredible blessing to me.
- Offer help with household chores. Emptying the dishwasher is a daunting and Herculean task to someone whose lupus (or other disease) is flaring. A simple offer of help can make someone’s day.
- Give/bring a patient a heating pad, an electric blanket, or a heated mattress pad. Many of us have poor circulation.
- UV-blocking stuff. I've had some awesome people send me uv-blocking clothing; one sent it all the way from Japan! Also, suggestions for sunblock, make-up with high SPF, etc are welcomed. Most lupus patients are photosensitive, so anything that blocks the sun helps us stay less sick.
- Ask if there’s anything you can pick up for the patient when you're going to the store. A saved trip = a HUGE amount of saved energy.
- If possible, don’t treat the patient differently in a professional setting. Allow us to retain our anonymity as sick people as much as possible. In my personal lab this doesn't apply, as I am not physically strong enough to do things without asking for help. But in an office...let the patient be an employee rather than "the sick person."
- Consider sending care-packages or small gifts. This is particularly true if you live far from the patient. A few ideas? Soft sheets or pyjamas; we spend an awful lot of time asleep in bed. An electric blanket, gift pack of a favorite tea (or beverage of choice). And many people these days have electronic gift lists on Amazon and other online vendors. Those lists are a great way to find something that would make the patient happy. Gift certificates for online companies are also great. For those of us who start running a nasty fever every time we go "real" shopping, online companies make our lives much easier.
As I said before, I’m sure this list will grow. But these are a few of the suggestions that I have received or (in a few cases) come up with. I hope it helps; I know how desperately helpless one feels when watching a family member or friend fight an illness. I hope by offering these ideas to make you feel a little less helpless, and give ideas of how to do something. I’ve been on both sides of this, and I know how badly people want to help patients!
Continued: How you can help part II.
Continued: How you can help part II.