This blog is dedicated to the people with autoimmune conditions and the people that love them. It aims to educate both parties on how we can both work through these diseases together. For family & friends, how they can care for and support their loved one diagnosed; and for the autoimmune patient themselves, how they can better cope and involve their loved ones. So what roles can you play as ‘The Watcher and the Patient with an autoimmune disease’?
Today while I was at the hospital, I noticed a family in the waiting room of my Rheumatologist’s office. It was a rather touching scene. I couldn’t help but feel a part of it. A young girl, to what I imagine being around 10 or 11, was called into the office. Her father embraced her and I could tell she was crying. He told her in a soft voice that everything would be ok as they slowly entered the office.
She had been recently diagnosed with lupus and was going for her second appointment. I had found this out from her mother as we sat in the waiting room together. It felt like deja vu, only I was a little older than her when my journey with PAN began.
I was glad to see how supportive her parents were, but it reminded me of a few of my friends who had been diagnosed with autoimmune conditions how their family & friends dealt with their conditions. Which led me to write this blog today.
When you love someone so much, it is very hard to be what I call ‘the watcher’. You have to watch them go through something that you feel rather helpless to do anything. There’s little you can do to take away their pain. So how can you help?
Firstly, listen. I cannot emphasize enough on having a sit down with their friends and family. Let them explain their disease and how it affects them. This is an integral time for you, as a loved one, to listen up.
Looking back on my journey, having loved ones listen to me, really listen, before voicing out their own opinions and feelings towards the whole matter is really important. A big part of the emotional conflict is feeling alone and scared. By hearing out our concerns (a little bit of a vent) and just being there can really make us feel supported.
A pet peeve of a friend of mine is how her mother could never bring herself to admitting her daughter was going through an autoimmune disease. Officially diagnosed in 2003, she had already been battling 4 years before that before she finally getting a bit of relief with the right treatment. Until this day her mother still insists that she do more exercise, blaming such symptoms such as her inability to walk for long periods of time (actually caused by advanced arthritis) because her daughter didn’t walk enough previously. She constantly tells her to take more vitamins, see acupuncturists and swim more. While all of these things may help her condition, they don’t necessarily take it all away (since her mother wasn’t accepting that her problems weren’t due to lack of exercise but should be attributed to her autoimmune condition, rheumatoid arthritis). My friend found herself explaining why she still had to take medicine even if she does do all those things. It has been a struggle and added extra stress on my friend, and while you, the reader might think gosh that lady’s mother is rather silly, my friend says she’s come to accept her mother as she is. She recognizes that her mother does love her, and trying to come up with ideas to ‘solve’ her daughter’s problems. We all act out love in different ways. It was her mother’s way of coping because she was scared of what her daughter really had, it is a serious disease. But if you could be a loved one who could accept what was going on, and seriously provided the support that patients such as my friend not only want but need, it could make things a whole lot easier.
Personally, I don’t mind the mother in that anecdote, I understand her too. But if you are reading this to learn how to support your loved one, it would really make a difference if you could help accept so that then you could move forward together in tackling the condition together. It can feel so frustrating trying to explain to someone who is not open-minded. Sometimes some people even act as if they blame the person for being sick; no one deserves illness or asks to get sick. If you can learn to accept, then you can move on and face what is really going on, fight the ‘real enemy’ and not waste energy on chasing antidotes that won’t do much good. You can learn the varied treatments and be there for them as you discover ways to help them get better or cope better so they can live a fuller life albeit a little different but still one they will come to realize they can still enjoy.
Something a lot of my autoimmune friends say they appreciate is when a loved one shows they care by reading a little bit about what they have. Instead of us having to explain what is going on, it shows us that you care when you actually know the name of the officially diagnosed disease. I met a guy who has had Wegners for 16 years and his brothers still forget the name of what he has. It seems like a little thing, but it means a lot when you care enough to educate yourself too on what is going on. I’ve heard of people experiencing really negative reactions from friends and family because they didn’t understand what an autoimmune condition was and why. Show you care by learning more. Also, don’t assume what you ‘think’ something is, ask questions it’s an even better step to understanding.
Discover the Invisible
As one of my previous blogs, aptly titled ‘The Invisible Visitor’, PAN like many other autoimmune conditions have been described as invisible diseases. There aren’t many ‘obvious’ signs when someone has one. I’m sure it must be confusing at times when your loved one might not appear sick. As you start learning more about the disease and its symptoms you’ll start getting ‘signs’ of when someone is having a flare-up, some days won’t be easy even when you think you understand it, but the person may react another way, don’t take it personally, be patient. It’s important that you both establish an ‘open’ relationship, one where you let each other know it’s okay to talk about it. Try to avoid misunderstandings, like making your friend or family member feel guilty for not being able to do some of the things they could do in the past.
I understand you might try to be empathetic, but don’t compare your ‘similar’ situation, having an autoimmune condition will make it a very different experience e.g being tired, having pain etc. not saying we experience worse or less just that it’s different, the best way to respond to this is rather supportive, “that sucks, I’m here for you” or “Have a rest, I respect you” which helps as many autoimmunees feel guilty when symptoms can be overwhelming. As the watcher, being supportive and respectful is the best way to show that you genuinely care.
In the midst of educating yourself about what is going on with your loved one. Why not tag along for their next appointment. If it’s okay with them, sit in on what the doctor has to say, this way you’ll get to learn firsthand the medical terms of how the disease is progressing and you’ll be provided with the perfect platform to ask how you can take care of your friend or family member and how to support them.
In this day and age, we are super lucky to have technology at the level it is now. Did you know that there is a huge community out there of people with family and friends that have autoimmune conditions? Talking to other ‘carers’ can really help you learn and understand what to do in the event of an emergency, flare-up or just general living with someone like that. It’s great to know you’re not alone in this and that others are out there. You can share your worries and they can give advice too, like the patients themselves, don’t isolate yourself, it’s okay to reach out and ask questions.
After a couple of years, my partner and I fell into a great rhythm of things when it came to my autoimmune condition. In my eyes, he knows exactly what to do when it comes to anything autoimmune related. He’ll bring me hot water bottles or cold compresses when I get body fevers (one of the symptoms that I get almost nightly); massages me when it hurts and even when he’s tired he knows how much it helps me sleep. On his mind is all the doctors’ names and numbers in my little medical team treating my disease and if things got bad he could instantly contact them and ask them what to do. He held me when I cried in the hospital, let me know how loved I was. He always goes with me when he can to doctor appointments and he remembers all my medication table names for in case I miss a dosage or I have a flare-up and end up in the ER, like earlier this year when I lost the ability to speak and see. These little things among other ways are examples of how a loved one can help. It’s the little things that count, be ready to help out if your loved one has to get checked in overnight at the hospital or help carry grocery bags if they can’t carry anything heavy because of arthritis. In the end, the most important thing is to let them know you’re there and that you love them. Be conscious that something is going on, but also subtle enough to give the person the chance to still feel normal. If in doubt or when there is really nothing you can do, squeeze their hand and let them know you are there for them.
The Autoimmune Patient
Hey, fellow autoimmune patient. Don’t worry this little term doesn’t define you, and neither does it have to define your life. I’m here to give you some tips on dealing with this whole fiasco. It doesn’t have to be as a bad as it seems, your job is to be as stress-free as possible and get better buddy 😉 So let’s eliminate one big stress factor that sometimes gets us all knotted up when push comes to shove. Having your loved ones close by is especially important when you’re going through these times. In the beginning, I found myself isolating myself, saying no one understands, and at times it is true, but that doesn’t mean pushing everyone away is the way, and definitely won’t make you feel better afterwards either. Giving others the chance to understanding what’s going on with you and helping you cope is a great way to feel better right now. Even if it may take months or years to get rid of your symptoms and problems, enjoy life now.
Start the Conversation
Like I said, in the beginning, I really didn’t know how to cope. I pushed my family way, got angry when I felt misunderstood and felt pretty much like everything was caving in. But I was really really lucky. I have the most supportive dad. He flew with me practically all over the country to get answers. When we both felt it wasn’t exactly treating the problem, I learned it was okay to get a 2nd opinion (well in my case there was a few more opinions than that lol but you know how it is). I think first things first, open up with your family. Invite those close to you to have a little get together.
You can break the news that you’ve been diagnosed and that while it is serious it doesn’t have to be a big deal. Nothing has changed only that maybe your loved ones need to be a little more conscious of things that might affect you negatively because of the disease. For example, you might gain weight on prednisone; or you’re going to be more fatigued than ever before so you might have said no to going out all the time; or you can’t drink more than a couple of glasses of wine than you usually did before etc. It’s important to get everyone on your team. I once had a friend lash out at me because I hadn’t told her anything and one day when I had a really bad flare up I closed up and she didn’t understand. Don’t put yourself in the situation that you’ll alienate people from you, if a friend does something knowing it will hurt you or be detrimental to your healing, then that is not good either and that’s not a true friend. But if they really do care, they need to know.
It’s ok to ask for help
Another thing is don’t be afraid to ask for help. While I am a firm believer in trying to do the best you can in anything, don’t kid yourself if you know cannot physically carry a huge suitcase or go out partying with your friends all night. Be honest. I remember during college, I used to pop a couple of extra painkillers if I knew a big night was ahead, just so I could keep up with my friends. I didn’t drink but I still paid for it the next day. Just coz I felt strong enough the night before, the next day I was so tired and had pain all over my body, and I knew it was because I was ignoring my body signs and the little war raging within. The body needs all the strength it has to heal, don’t abuse it with too much exhaustion.
It’s a two-way street
When you start an open, free-flowing relationship from your condition, you’ll find you can explain things better because everyone now is open to the idea that you have changed a little bit. They won’t get offended if you turn down an offer to go out that night if you’re having a flare-up, and they won’t say comments that might hurt you without knowing it. They’ll also be more understanding when you say ‘today isn’t a good day, I may need a bit of time to sort myself out’.
Don’t play the blame game
When it comes to family and friends, sometimes they can be really annoying. Sorry to say that but hey you don’t have to have an autoimmune condition to know that we all feel that sometimes, they’ll feel that about you sometimes too, part of life haha. But as a patient myself, I get moody, tired, and some days just want to be left alone. Other days, I don’t only feel those things, I act out on them getting angry at the tiniest thing because I’m already in a negative place. It’s important to remember that on these days, while it’s easy to let it out on your loved ones, please don’t, you’ll regret it later. As conditions go, autoimmune conditions can go up and down. Flare-ups can and will happen. Symptoms might get worse, or additional ones might turn up. Instead of blaming others or getting angry, let them know that you’re feeling a bit under weather that day. Help them understand instead of just seeming like some crabby person who isn’t appreciative of someone else trying to help them.
Positivity can be the most wonderful thing when it comes to handling your disease. Being positive is contagious. If you remain positive so will your loved ones. Looking at the brighter side of things and keeping an upbeat attitude to your treatment not only helps ease the worry of those close to you, but it’ll help you cope too. Don’t believe me? Well seriously, do you think thinking negatively will help anyone? Does feeling sorry for yourself make your body heal? No, it makes the pain worse even at times, it makes you feel depressed, you’ll lose sight of what’s really important. The main aim here is to remind you that while yes you do have a disease but that doesn’t mean you can’t keep living life. You’ll find opportunities will still arise if you keep yourself open up for them. Why not inspire others to live life to fullest? They can look up to you and say, that guy/gal is doing great I didn’t even know she was sick. There are days that will test you, and it’s okay to break down every once in a while.. But what are you doing on the other days? Are you showing others kindness? Are you teaching your own family and friends on what it’s like to be a survivor? Go out and get em’ make yourself proud, follow your own passions, learn new ones.
Nice talkin’ to ya Doc
Earlier in part 1, I suggested it might be a good idea to take along with your loved one to a doctor appointment. I’ll share this idea again to you guys from our point of view. I’ve found that sometimes, especially at appointments that are little heavier (e.g doc suggesting you have a biopsy or a change of medicine) it’s nice to feel a little support by having someone with you. Someone to hold your hand and listen too. Ever been so nervous that you weren’t really listening or forgot what the doctor said? You’ll have your loved one as a witness and you can talk about it later on together. But lay down some ground rules too. It can be really bad if you bring someone with you and they talk too much that you don’t get anything out of the appointment yourself. Make sure the person you take with you understands that it’s important to listen first and ask questions at the end. Remember to always bring any tests you’ve done prior to seeing the doctor. Bring a list of any concerns and questions you might have so you can use the allotted time as best as possible.
Learn what works best for you
As you go along, you’ll learn numerous tips to help stop the pain or other uncomfortable symptoms you don’t like having. Whether it be listening to music, or getting a massage, there are tons of creative ideas out there to help cope. Hey, even this blog is part of my way of coping, it’s like a diary. Therapeutic. On really bad days, I put on classical music like Beethoven’s Moonlight Sonata and just lay down and breathe. I have a friend who loves foot spas and it’s grown on me too. While it doesn’t take everything away, in those few minutes you can let yourself be, be in that moment. Others use distraction techniques to lessen symptoms impact. Such as doing homework, cleaning the house etc. So ask yourself, what works for you?
A big part of autoimmune diseases might limit your ability for physical activity. But that doesn’t mean you still shouldn’t try to stay physically fit. It is great to keep you feeling positive and good. It also keeps your body healthy to keep on fighting these diseases. The type of exercising will change. Maybe you’ll only be able to exercise for so long say 30mins. Or maybe it would only be limited to low impact exercises. Exercises like swimming or yoga. It’s good to have a buddy with you to encourage and support you.
There is a wide community out there that is ready to welcome you with open arms. There are lots of people with autoimmune conditions. While most might not have exactly what you have, they can still relate and offer support like no other. They’re facing many similar obstacles and frustrations that you might be facing. You can find these groups on facebook, google groups, yahoo groups etc. I found them really helpful especially when I joined my first group a few years ago. Groups have a bunch of people of all races, ages, and gender. Some are more advanced than me others just newly diagnosed. In these groups, they share personal experiences, medical journals and just general information for autoimmune conditions. All really interesting topics along with providing a sense of community that someone else understood.
definition: interaction between two different organisms living in a close physical association, typically to the advantage of both;or in Autoimmunee terms – how you can live together that benefits both parties.
If you have an autoimmune condition or know someone who does I hope this blog post helps. Much love, Camille. If you have any personal concerns, comments, ideas or stories please feel free to email me. I love receiving mail, long or short.
I wish you all the best that you and your families can grow together through this time. May you be able to do it best with love, patience, and understanding 😉 Big Hugs, Camille.