Bad ass post for the newly diagnosed

So you’re newly diagnosed with autoimmune arthritis eh? Or know someone who has been? You’ve come to the right place!

It can be really difficult to navigate the world of autoimmune arthritis, whether you’re newly diagnosed or not. There is a lot that happens with this group of diseases – and with chronic illness in general – that is unpredictable and unknown.

The first thing I’d suggest doing is to learn as much as you possibly can about the disease you have. I can’t even tell you how many times I’ve been the one who basically orders an x-ray or something because the pain I was experiencing seemed benign to the doctor but wouldn’t to an expert on the disease.

This goes triple if your disease is considered rare.

Below are some terminology definitions that can assist:

If you really want to be an engaged patient, you have to have a certain amount of self-care and self-love under your belt too. It’s hard to fight for yourself if you don’t think you’re worth fighting for. Check out the self-care/self-love page above and the resources page for help with this.

Another thing that many people find helpful is connecting with others who have the same/similar diseases. If you utilize twitter, you can do this somewhat anonymously using the hashtags #chroniclife #spoonie #rheum and more. There are tons of people and groups and pages all over social media to help you, so search away!

I can’t count the number of times my life has been saved or symptoms have been explained by fellow sickies instead of doctors… then of course you take that information to doctors and they totally agree. Social media is a great place to share, rant, and find help.

If you don’t know what a spoonie is, read the spoon theory. It’s about to become integral to your life. Oh, and join cool organizations like CreakyJoints and Arthritis Introspective!

You can check out the resources page for more ways to connect with others.

That brings up another (related) issue – support. Some people will accuse you of faking your illness or acting like you’re far worse off than you are. One of the things about loving yourself is knowing when to fight to keep those people in your life or when to dump them. Sometimes illness helps you learn who your real friends are.

And sometimes the spoon theory helps them figure out what you need out of a friend right now.

Now that you have a somewhat firm base for fighting for yourself, we can look at what you need to do to get the best care.

First of all, you need to work on assembling your A-team.

Your primary care doctor is about to become your best friend in the whole world. A lot of medications for rheumatic diseases cause your immune system to lessen which helps the progression of the disease… but also helps you get sick a lot. Make sure you have a primary care doctor that believes you are ill and knows enough about your disease to help. They also need to be team players. A great way to approach this is to tell them that you need a care team and ask if they’re comfortable being a part of it.

Your rheumatologist is probably the most important decision. You need a doctor who knows your disease (or is willing to learn), who is a team player, and who is up to date on current research and medications.

Other members of your care team could include:

  • Eye doctor
  • Physical therapist
  • Occupational therapist
  • Psychologist
  • Dentist
  • Orthopedist
  • Dietitian
  • Allergist
  • Immunologist
There are more people that this list can include depending on the severity of the disease and other factors, from cardiologists to gynecologists and more.
Also, please think really hard about the psychologist thing. It is SO important. I think everyone could benefit from someone like that, but things can get especially heavy and rough with chronic illness added in. Connecting with others via social media can be really helpful, but it doesn’t replace therapy.

Now that you’ve started to build your care team, it’s time to decide what medications you’re interested in. This is a conversation that needs to happen with the rheumatologist and any other doctors who treat you for major life issues.  I would encourage you to look through this page on juvenile arthritis basics because it includes information about the medications generally used to treat any type of rheumatic disease.

You may not want certain medications because you may be trying for a family soon. Drugs like methotrexate, cellcept, and arava all stay in the body a while and have very harmful effects on babies and fetuses.

Make sure you know what medications are covered in your insurance formulary and what you might have to do to get access to certain medications. Knowing what your insurance covers will also be important for tests and access to certain doctors.
No matter what you are on, if you find it isn’t helping or feel like it is losing effectiveness, SPEAK UP! Your care team will not know that something is wrong unless you say something (or your labs show it super obviously)!

Investigate any accommodations you may need for work like FMLA or for school. One of the hard things is that FMLA is unpaid unless you utilize paid time off to cover it – and that’s if you’re lucky enough to have that. It also doesn’t become available until you’ve been with a company for a year. Always check in with HR to see if they can think of anything that could be helpful for you. Likewise if you’re at school, please check in with disability services on campus.

In any case, make sure your workstations and where you spend the bulk of your time is as ergonomic and joint-friendly as possible.

If you are in college, I strongly suggest you check out Chronic Curve. Emily is amazing and incredibly helpful despite working and going to school full time with Still’s disease and other illnesses.

If you’re in a relationship or into having them, this can affect many things in regards to intimacy from sex itself to comfort levels and more. Check out the page titled ‘let’s talk about sex‘ above. It’s about everything from sex to relationships and more in the way of intimacy.

Do you need something not listed here? Let me know!

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