Learn, ask questions, get pamphlets for Lupus Foundation of America, (LFA, knowledge is power and emotionally satisfying. Support groups, professional therapy and family/friends are valuable resources. As valuable as these sources are you need to be cautious.
Support groups are great for meeting other individuals with Lupus and fostering like minded and bodied individuals. Yes, you are not alone! So, refreshing to know as individuals with an illness we can come together and support each other. Now for the caution, make sure it’s a closed group with rules for your safety. Lots of stalkers on internet and miss information. You may not like the format of the group, or the group may not be well suited for what you were looking for. No worries there are tons of group keep trying. Remember support groups are usually run my individuals with their own purpose in mind and have lupus too. There are usually more than one administers of the group and the one you have befriended may get sick so not available so make lots of friends. Lupus is isolating at times and support groups can help you fill the time. Individuals on the support group page are living with Lupus as best they can, you will meet all ranges of disease and remissions, and suggestions by laypersons not medically sound so pick and choose your information. Support groups are not for you or me to judge the content or others experiences so be kind. If you find a comment off color or totally false, you report it to the admin to take care of the situation. As a former admin we don’t see everything 24 hours a day of posts. I have met some great people in my support groups and have been some great advice and tips for living with Lupus! Many of people I have met on support groups I can now call friends. Be active in the support group. What you put in you get our, ask questions, give your opinion or experience and be supportive to others.
Deciding whether to go for therapy is really a personal choice. I found therapy was a place I could express my frustration, cry, and rant with no connection to the person and no judgement. Sometimes, the people closest to us can’t understand, gets too involved when all you need to do is rant or just doesn’t get it. I went to therapy when I had to give up my career. I had gone to school and worked my way up in my field. I loved what I did, and I was good at it! At the time that was my identity and giving it up for Lupus treatments broke me. Now after 41 years of living with Lupus I still would love to work and have had a spurt of part-time employment but realize my health is more important and I want to use my spoons enjoying life and my family and friends. As I remarked before, Lupus is isolating when we are sick, and all the appointments make us unreliable for family and friends at time. It’s a juggling game and me stick around and some don’t, this hard reality is tough to chew, and we all need someone to talk to about the loss or losses. Not being who we were before Lupus is a loss too. Discussing issues with a professional can help you learn to cope in the silence and quieter times of your life and help with mourning our losses. It’s a positive self -help/self-assist tool, try it you may like it. It did take me a few try’s to find a therapist until I felt the click, yeah, I like them and they are my person for therapist.
Family and friends love you and are trying to understand this mystery disease that you have been suffering while you were trying to get diagnosed. It’s hard for them too. With that said you need to teach them about Lupus and how it affects you, so they truly understand. Having an invisible illness is crazy for us for our loved ones its tough too, give yourself grace! One of my most important lessons was learning that people want to help but I need to ask specifically for the help. Putting the help in words is easier said then done. Knowing when to go take a nap is important. Go and sleep get the rest without guilt of not being around to enjoy or do an activity, it’s showing love you your person and taking care of yourself. Once you take care of you then you will be able to really enjoy something without being in a fog state or a state of irrational thoughts. Yes, with Lupus you will mostly like miss out of some family and friend time, most of the time they will understand. Other times you will loss friends and or future invitations and that is okay! It’s not nice and it does hurt, a new way of life is not always easy but can be rewarding and fun too. I call them dead weight now, but boy did hurt while going through it! Setting your boundaries is necessary for all the care living with Lupus takes. It I play I pay. Usually, I gladly pay because it is worth it for me. I know I need to schedule a rest day after a fun filled or busy day. Pacing yourself is key to success.
Things people can do for you runs the gamut, things I have asked for our lifting heavy objects, making my bed, doing laundry, running to the store for milk or bread, carrying the laundry basket, watching my child during a treatment day, one friend organized the playroom for me, got to love OCD friends! Such a great help. The biggest thing I did was teach my immediate family about, The Spoon Theory. I would say I have 2 spoons left would you like dinner or read you the book pick one. I knew I could not do both. Not a good example but still same point. Once my disability was approved, I hired a cleaning person every other week.
Setting Boundaries
Personal boundaries are really hard to set in life in general; it is even more difficult when you have an illness. You will set boundaries with all things in life: your personal being, mental and emotional, social – all of the things. You can only do so much. You want to surround yourself with positive people. Negativity does not help, it actually depletes you. Limiting what you do and who you do it with is a form of self-love. It allows more energy for yourself and others. For instance, a friend who is overly needy is not a friend. Someone who needs you to give and do all the time is incapable of understanding what you truly need. Limit time with folk that drain you. Working to maintain old friendships is sometimes too heavy for someone with little energy to spare. You are in charge of your self- what you actively give energy to and what is simply not worth it. If you are getting out of your car from a handicapped spot and an able-bodied person makes a disparaging comment, is it worth getting into it with them? Are they are open to understanding? In that moment you decide your boundary and if this is worth energy or not.
Don’t play the would have, should have, could have game. It is a waste of time and energy. Instead strive for the wow moment, the glimmer and the win. Find those every day. Go back to the wins when you are having a ‘what would have’ set back. Your mindset and positive intentions make a huge difference. You are important as you are now and affirming that helps. It is easy to get in a slump. You are not the only one with a cross to bear. Everyone has something to deal with. Stop comparing yourself to others- what does that accomplish? Live your life out loud because you are not your illness and are worthy of a good life.
