The Things I Wish I Knew
Getting the diagnosis of lupus or any other life-altering chronic condition is overwhelming. At first, you feel like you know nothing and have no idea where to even turn for good reliable information. As you start your research and start understanding a little more about the issues you are going to face for the rest of your life, you begin to feel a little more comfortable with the new diagnosis. But like most things in life, there are going to be things that you can’t fully understand until you cross that bridge. That being said there are so many things that I have had to learn the hard way, that I wish someone would have told me. Sadly, like many other things, living with lupus is no different, you have to learn as you go.
Learning through life with lupus
Over the last 8 years as I trudged through the ups and downs of living with multiple chronic illnesses there are many times I have thought “Man, I wish someone would have told me about this!” But sadly there is no handbook for living with one or many chronic conditions. Most of what we learn is through a constant game (for lack of better terms) of trial and error. Sadly, what works well for me may not work for you. However, I have kept a list on my phone over the years of things I learned the hard way that I wish someone would have told me. I use that list as a guide for things to remember to tell those newly or recently diagnosed. As well as a guide for ideas to write about.
The list I compiled over the years with the help of several of my closest lupie friends could apply to anyone, anyone with any chronic condition. But could change the way you look at your life.
I wish someone would have told me that...
- I wish someone would have told me that people don't understand lupus and will often walk away. Either because they can’t deal with all the changes and cancellation of plans. Or because they can’t handle your changing health.
- I wish that I would have known that providers are not alike, many will not understand lupus and how it impacts your body. I wish someone would have told me to always keep a hospital bag packed and a phone charger in your car.
- I wish someone would have warned about how poorly chronic pain patients will be treated if they present to an ER for help. I wish someone would have prepared me for the fact that I would need to learn as much, if not more, about my conditions than my providers.
- I wish someone would have told me early on that online support groups are so helpful. I wish someone would have prepared me for all the time I would be spending in Dr's offices, waiting rooms, and ERs.
- I wish someone would have prepared me for all the times I will have to cancel plans.
- I wish someone would have warned about all the looks and unkind words I would hear due to my wearing a mask to protect myself, or when parking in a handicap spot even though I look so young.
- I wish someone would have warned me that when I got the lupus diagnosis it would be more than that, it would change my life forever.
Support from others with lupus
I feel that I am not alone in my feelings regarding the things I discussed above. In fact, I feel confident that many of you can relate to some if not all of the points I discussed. I truly felt like I had a good grip on what things would look like for me following the diagnosis. I stupidly felt that my years of working as an RN, and the education I received would prepare me. But that couldn’t be further from the truth. I was so unprepared. It seemed like every day there was something new coming up that I had to deal with. The only way I survived was because of the support group that I was part of. They have been there for me every single step of the way.
That being said the most important thing I have learned on my lupus journey is that I am truly never alone. And I want each and every one of you reading this to remember that. YOU ARE NEVER ALONE ON THIS JOURNEY!!! There are tons of online support groups out there as well as in-person groups. (In-person groups are mostly postponed because of COVID).The online support groups are filled with people who have walked a similar journey and are willing to chat and talk to you through your struggles.
Does your employer provide workplace accommodations due to your lupus?