Having a Loved One with a Chronic Illness
thoughts, suggestions, and perspective
“Where did my friend go?”: Dealing with relationship changes
As a family member or friend, you may feel confused about what is going on with your loved one as they deal with the illness. The person you once knew, is in some ways, no longer there. Look hard; you will still see the person you know and love hiding in there behind their illness. For example, I used to be known for being energetic, a go-getter, and for my love of being independent. Now, I am always fatigued and am not physically able to go out into the world seeking opportunities, and in many ways, I am no longer as independent as I once was. However, I am still the same Jackie in a lot of ways! I still am funny (I like to think), stubborn, caring, enjoy cooking, and love my family more than anything. I’m sure those who know me could think of more examples.
My illness is not who I am, although a lot of time it keeps me from doing things I feel once defined me. Sometimes it is hard to get out from under this dark cloud as is obvious from this woman’s blog post: http://everything-and-nothing-at-all.blogspot.com/2006/12/chronic-illness-and-relationships.html No two people will handle relationship changes the same, so your loved one may feel completely different than I am about to go on and explain.
Saying family member/friend will be redundant, so I will just say “friend”, but these thoughts are for everyone who knows someone with a chronic illness. For friends, it can be difficult to find ways to interact with your friend when they can no longer participate in activities you previously did together. Just visiting your friend, offering to drive them to an appointment, or calling to check in and talk about old memories can go a long way. You can also get creative and bring activities to them in their home. What this activity is will really depend on the person. Brain fog, chronic pain, and issues sitting up can make some activities make the person feel worse rather than cheer them up. Make sure you consider that.
Here are some activity ideas:
- board games — quicker ones will probably be best
- cook a meal and eat together
- if he/she cannot help with chopping, have them pick a recipe online they think sounds good
- pick a skill to learn together; crocheting, a foreign language, jewelry making, etc…
- call, ask how they’re feeling, then don’t make the whole conversation about their illness — talk like you would have prior to the illness if that is possible
- watch movies
- choose a book to read; call, e-mail, or message each once a week and discuss it
- do a “spa day” at home– soak your feet, paint your nails, do a face mask, etc…
- help your friend make videos or a blog about his/her illness
As you can see, although your friend may not be able to do the things you used to love to do together, there are other things you can do. It will mean so much to your family member or friend. This is especially true if they don’t get to see you as often as they used to or if they don’t get to leave the house much.
“How can I help?”
1) Give permission to mourn, validate feelings, and empathize
Earlier I said “My illness is not who I am, although a lot of time it keeps me from doing things I feel once defined me.” As I came to realize how drastically my life had changed, it was as though I was mourning the loss of a close friend or family member; only I was mourning the loss of myself. It was, and still is, an emotional roller coaster, one day it wouldn’t bother me when I thought about it, other days I would feel angry, sad, numb, or helpless. Having people in my life let me know they support me and understand why I am so sad sometimes is priceless. Here is what helps me most when I am feeling down…
- Validation: it is different than empathy or sympathy in that there is no “poor you”. The message when you are validating someone is “you are entitled to feel/act the way you do, it is a normal response”. You are giving the person “permission” to be upset, distressed, or however they may be feeling.
My Mom would tell me I am mourning a loss and something would be wrong with me if I wasn’t upset about having to quit my job and completely change my lifestyle. My fiance would tell me it is okay I can’t be tough every single day, it is good to let it out sometimes. This validation helps more than you would ever guess.
- Empathy: There is a HUGE difference between empathy and sympathy. When I was training at a suicide/crisis hotline, it was explained to me like this;
Imagine I am stuck down in a huge pit. Sympathy would be you discovering me in the pit, crying with me about being stuck, and jumping down in the pit with me. Then we both would wallow in our misery. Empathy would be you looking down at me in the pit, validating I am right to be distressed about being stuck in a pit, and then saying “I will do whatever I can to help you get out of this pit”.
Empathize with the person with the chronic illness, don’t sympathize. It is okay to cry or be angry at the illness with them, just do not make that all you do. Stopping there doesn’t do much to help the person. Validate your loved one, but never say you understand exactly how they feel. Let them know you will never understand exactly what they are experiencing, but you are there for them to to talk to and you’d like to learn/understand more about their condition. Ask if there is anything you can do (errands, visit, cook) to help. Better yet, surprise them by sending them cards every so often letting them know they are on your mind, pop in with their favorite candy, or take the initiative to learn about their condition.
2) Never make statements like “but you don’t look sick” or “you look really healthy, you’d never know you’re sick!”
I don’t mean you can never tell me I look pretty, just don’t make statements that minimize my (or the person in your life) illness. POTS and many other illnesses are what are known as invisible illnesses. This means on the outside, a person looks “normal”, maybe even quite healthy, but on the inside, they are sick. Looking at someone with an invisible illness, you’d never know anything is wrong.
Most people with an invisible illness have had dozens (I’ve had hundreds) of experiences of their illness not being taken seriously by family, friends, co-workers, strangers, doctors, and nurses because they look healthy. I consider myself lucky in that most of the people who don’t understand are friends-of-friends, doctors, or nurses; my family, friends, and co-workers all know me well enough to know if I say I am sick, I am sick. Imagine going to the doctor with a sinus infection brought on by a cold and not exhibiting measurable or noticeable symptoms (you don’t have a runny nose, fever, cough, etc.). However, you always get sinus infections and are positive something is wrong. Well you have nothing wrong they can see. For this reason, the doctor or nursing staff treat you like you have a mental condition rather than a physical condition. They don’t offer you any treatment other than the suggestion of seeing a psychiatrist. This makes many people with an invisible illness, including myself, sensitive to people telling us we don’t look sick. Having an invisible illness versus a visible illness is both a curse and a blessing…
On a daily basis, I deal with the fact people cannot see anything is wrong with me.Examples….
- The lady slowly counting out her change in front of me at Walgreen’s, or the guy who has his son run back to grab another can of beans at Kroger, have NO IDEA I am feeling like I am about to pass out the longer they make me stand. They really don’t notice anything unusual until I sit/crouch/lye down on the floor when it gets too bad. It is times like these, I wish they knew I was feeling like I was going to pass out even if I look like a normal 23 year old girl.
- People looking at me strangely when I use the motor carts at Walmart. I imagine them thinking “What is wrong with her? She must be just messing around”
- Sometimes people in my life don’t understand I cannot do the things I did before. It is not that they don’t want to understand, invisible illnesses are just a hard concept to grasp. This is especially true if you have a friend like me who will try and act his/her best and healthiest when you are around only to collapse after you leave.
- “You’d never know you are sick”. The reason this bothers me is because I went through 5 years of DOCTORS telling me this. Statements like, “It is awful to hear how sick you are feeling, but I want you to know you look gorgeous” are better. It includes the fact you recognize I am sick and validates my illness. Better yet, leave my illness out. Just tell me I look pretty; not everything has to tie back to my being sick!
- The pain, emotional distress, and symptoms invisible illnesses cause are not always as obvious as they are with someone who has a disease such as cancer. I have read about many people who have the experience of their family and friends being very supportive at first, and then fading and/or getting tired of hearing about the person’s illness or helping out. I feel so blessed to not have experienced this, but I know it happens to people often.
Sometimes it is nice to be able to go about my day without people in stores or friends I haven’t talked to in a long time knowing how sick I am. The over-arching theme is it is nice to just blend in with the crowd when I want to and not have my illness be the first thing people see.
- If I am having a good day, I can curl my hair, put on some make-up, throw on a dress, take a bunch of caffeine/amphetamines (I know it sounds awful), and act like a “normal” 23 year old girl! No one looks twice because my compression stockings don’t look any different than nylons, and my invisible illness is, well, invisible.
- Generally, people don’t gawk at me because of my illness.
- I know from the sympathetic looks I get from some people when I use the Walmart scooter, it isn’t always rewarding to recognized as being sick. It is nice to be able to blend in. However, some people take the scooter as a sign I am someone who needs help and they take it upon themselves to offer it. They will ask if they can get anything for me, they will offer to help get my groceries to my car, or they will just say “hi!”. These things don’t happen when I am walking around a store because I look “normal”. It brightens my day to see how nice people are.
- I can let people get to know me for who I am before letting them know I have an illness called POTS that rules every aspect of my life. If I were wheelchair bound, they might see the wheelchair first, rather than me as the individual I am.
3) Ask if there is any way you could help me out. If I say no, do something little anyway.
When I first got sick, I was used to being independent. I took great pride in being able to do things on my own, supporting myself, and being able to manage anything that came my way. For this reason, I used to (and still sometimes) reject offers of help. I didn’t want people to cook for me, help me sort my mail, help me clean, or come do my dishes. I took this as a sign of weakness. All it took was a few times of my mom just cooking something I like and dropping it off or my fiance doing the dishes without my knowledge to realize how much help it was! It saved so much of my energy that could be redirected toward healing. Even something as small as someone sending me a card can really brighten my day and give me a boost.
Here are some ways people have helped me I really like:
- cook meals
- offer to accompany me to the doctor — brain fog is an issue for many and I find doctors take me more seriously when I have a family member with me)
- ask if you can come over, lay around, and watch TV or movies with me
- text/call me and tell me about a fun memory that just popped in your head
- send me a card every so often
- if you are able, offer to help with a bill — people with invisible illness often are on limited incomes
- come help clean — I am so weird about people cleaning my stuff, so my mom will have me write down specific tasks
- do my laundry for me
- learn about my illness
- offer to give me a ride, family members are constantly going out of their way to give me rides places!
- send me a happy picture of us
- give me lots of hugs, cuddles, and kisses
4) Learn about my illness
I feel so appreciative when people take the time to learn about my illness. If you are one of my family members or friends, here is a great website to learn more about Postural Orthostatic Tachycardia Syndrome (POTS): http://www.dinet.org/
Just know going in; you are going to come across a lot of “magical” remedies, and causes of any invisible illness, that are simply not true. Please don’t share them with the person you are trying to support. Unless you feel it is really important, I recommend not telling the person how to get better. Trust me; they are trying. If you must share a remedy, fact, or treatment, phrase it like this, “I was reading about POTS the other day and saw a treatment called/involving ______________, what do you think about it?” This gives the person a chance to let you know they have or have not heard about it.
The reason learning about someone’s illness helps is because it shows you care. Just saying something like “Jackie, I read how POTS makes you nauseous, I wish I could take it away for you” or “That sounds hard never knowing how you will feel when you wake up” is helpful and much appreciated. It shows empathy and validation (see suggestion number one). Ask the person what types of remedies they are using, for me it is lots and lots of salt, compression hose, and lying flat. When they are at your house, show them somewhere they can lay down if needed. All of these things are signs you are trying to learn and are appreciated SO MUCH!
5) Remember there is a person in there, they are not just an invisible illness or diagnosis
I think this is fairly self-explanatory. Refer to the section on the top of this page about relationships to learn more about this.
6) If you are a primary caregiver, take time for yourself
This is so important.
I know it is hard on my family to take care of me and probably even harder on some days to put on a happy face for me. As a caregiver you are probably running errands, waiting on the ill family member, entertaining them, holding them when they’re upset, and laughing with them when they’re happy. No matter how much you love this person, it is exhausting and emotionally draining. Feeling like this doesn’t make you a bad person.It is SO important you take time for yourself. If you do, it is less likely you’ll get to the point of feeling bitter. Don’t let yourself get swallowed by your role as a caregiver.
I want my fiance, Jake, to do activities he enjoys even if I cannot do them with him. When he is gone doing whatever activity, I am not sitting at home bitter, I am happy because I know this person who gives so much to me, is doing something that makes him happy. I encourage Jake to go play pool or do activities with his daughter, Emma. This is because I love and appreciate him. If you never take time for yourself, you may begin resenting the person or get burnt out. So don’t let it happen; take time for you!! This is a great article about this topic; http://www.yourmindyourbody.org/self-care-for-the-caregiver/