A chronic illness is a medical condition that will last a long time - perhaps forever. Some chronic illnesses get worse over time, some may improve with treatment, some may remain dormant until an acute flare-up.
One thing is universal about chronic illnesses - those who are diagnosed with them tend to feel isolated: mentally and physically. It's a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.
If someone you know and love has been diagnosed with a chronic illness, you might feel desperate and helpless - but you don't have to.
Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. It's important that people with a chronic illness feel truly cared about. Interaction with the sick person is important.
Here are some ways to help a friend or loved one with a chronic illness:
If You Have The Chronic Illness:
Put an end to family secrets. Don't try to protect your friends and family from bad news - communicate directly and openly with family members.
Include your children - even though their understanding of the illness may be limited, children appreciate being told what's going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.
Be selective about who you talk to about the illness. Choose carefully those with whom you'd like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.
Be clear about how friends and family can help you. People love to feel useful, so don't be afraid to ask for help or favors.
Be your own advocate. It's so hard to learn to speak up about your condition. It's hard to talk about it sometimes. And it's really hard to ask for special treatment when you're not that kind of person. But you have to be brave, and you have to learn to ask for help when you need it.
Restaurants will accommodate special food needs. Theaters will seat you near an aisle. Airplanes will let you board early with families and first class. Some national organizations print up cards you can carry explaining your condition in layman's terms to use in public.
Find a support group. Go to it. Take a family member or friend if you're scared. It's okay to be scared. Go early your first meeting, and the leader of the group will likely seek you out and chat you up to welcome you. That's their job, and they will know how to put you at ease. Check out the recommended reading. Ask others in the group what has and hasn't worked for them. Some support groups will bring in guest speakers that will be helpful in the learning process.
There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? If we could walk away from it, we totally would. That's why support groups are super helpful.
How To Help A Friend With A Chronic Illness:
Be honest - say, "I wish I knew what to say, but I care and I'm here for you."
Be there for them in any way they need you.
Do go to support group meetings with your friend. Family and friends are always welcome, and that's the best place to ask questions you're nervous about asking.
Keeping it light and making jokes is okay. We're not as fragile as we sometimes seem. It's all about the timing and the presentation. If you know the person well, do what you know they will find funny. Laughter is healthy.
Let them know that they can always talk to you - even if it's just a vent session.
Always listen when your friend is frustrated - chronic illnesses are usually very frustrating.
Be there if your friend needs help, but encourage them when they want to do it themselves.
Remind your friend that he or she is in a very hard position - but that he or she is coping well.
Treat your friend as though they are a whole person - despite any limitations. Your friend wants to feel in control and capable, not as if they are wearing a big old banner for sickness.
Learn about her illness. Ask your friend for more information about how her illness affects her. Just because you read about her illness online doesn't mean you know how it affects her.
Let your friend know you are thinking of him. Send a card, an email, a text, a phone call.
Offer specific forms of help - "I'm going to the grocery store, do you need anything?" or "Can I do some laundry for you?" Any number of household things, your friend might need help with. Offer to take care of it.
Learn if your friend is on a restrictive diet and if so, offer to cook within those dietary limitations.
Offer to help research the disorder, if your friend wants help.
Volunteer to watch his or her children. Take the kids out for ice cream or to a movie to give your friend some peace.
Offer to watch his kids during doctor appointments. It's often hard to find so many babysitters, and taking kids to an important appointment isn't always an option.
Chauffeur your friend around to places she may need help - the doctor's office, the grocery store, other errands.
Ask the person's partner how to best help the family. If there are a number of things to be done, organize a number of friends to help complete these chores.
Offer to take your friend to the doctor and take notes for them.
Do be an advocate for your friend.
Do encourage your friend to continue trying new things. When treatments don't work, those with a chronic illness get discouraged. When doctors give up on them, they get frustrated. When they get tossed around from one specialist to another, they get anxious. But stay by their side and tell them you'll be there when they are ready to try something new. That tells your friend that they have a reason to keep trying. Just keep it generic, so they don't feel like you're being a know-it-all.
If the illness is terminal, offer to help your friend make arrangements.
How NOT To Help A Friend With A Chronic Illness:
Don't tell your friend how they "should" feel. Unless you have their illness, you don't know.
Don't presume you know what's wrong with your friend.
Don't compare your (xyz) to their (abc). That's like comparing apples to elephants.
Don't discuss worst-case-scenarios unless your friend brings it up first. And if they do, listen supportively - this is the hardest conversation imaginable for your friend.
Don't suggest drugs or treatments someone you know takes. Your friend is going through a treatment plan with his or her doctor - let the doctor take care of the medical advice.
Don't criticize them for whining on a rough day.
Don't offer the latest medical advice you heard about on Dr. Oz. In fact, don't give them medical advice at ALL, unless your friend has asked for you to help research the illness.
Don't downplay or belittle their illness in anyway. Your friend is fighting a battle - don't lose sight of that.
Don't assume your friend copes the same ways that you do. Let him cope in his own way. Don't tell your friend that they are coping the wrong way.
Don't say, "God will heal you," it may make your friend think that you don't understand what she is going through and she may avoid mentioning her feelings at all to you.
Don't bring up each "cure" you've heard about his illness. He's constantly being bombarded with "cures" and needs a break.
Illness isn't just a matter of attitude. Don't say things like, "when are you going to get out of bed?" or "I heard stress causes this illness." It's bullshit and it's unfair.
Be sensitive to her limitations. Don't say things like, "Let's get some fresh air and take a walk." Your friend knows her limitations, which may change from day to day. Things she could do yesterday may not be the same as what she can do today. Don't question that.
Never insinuate that your friend is "faking it." People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is "made-up" is a special breed of hurt.
Don't ever ask "How are you?" or "How are you feeling?" because the answer never changes and your friend doesn't want to talk about it. Instead ask, "How is your day going?" or "Is there anything you need help with today?"