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in Health · September 17, 2019

Chronic Illness Advice: Resources for the Newly-Diagnosed Patient

As this month marks 18 years since my chronic pain started, I’ve been reflecting a lot on what my life has looked like and how it has been impacted by this pain. I have said for years that I “benefited” by starting to experience pain so young because I learned how to be an adult while dealing with it; basically, I didn’t have to completely re-shape my life because I developed chronic illnesses. But I know that that’s not the case for everyone, and adjusting to the chronic illness life can be hard. With that in mind, I’ve pulled together this chronic illness advice post to help any newly-diagnosed patient. (While I’m sure that people who have been diagnosed for a while can benefit from this post, I did keep the newly-diagnosed in mind when writing it.) I hope that it helps you!

Please remember that I am not a medical professional! I’m giving you advice as a long-time patient.

Long-time chronic illness patient and blogger Kate the (Almost) Great shares her chronic illness advice for newly-diagnosed patients.

Chronic Illness Advice: Research

Why you should research: Other patients can be awesome resources. Don’t get me wrong! But your knowledge of your chronic illness should come from people with a medical background. Now, if you’ve been symptomatic for a while, you probably know several medical professionals who don’t seem to know their specialty very well (I know I do). So don’t take everything every professional says as gospel. An amazing thing about being in the 21st century is the incredible Internet. Google your illness and read websites like WebMD, the Mayo Clinic, the Cleveland Clinic, advocacy groups, and more. And make sure that, if they’re not a big reputable site like those, they link to their sources.

How to research: Start with a simple Google site and see what the first page results are. I advise starting with your condition in general – such as “rheumatoid arthritis” – and then narrowing it down once you figure out what you’re most interested in learning about at that time – such as “rheumatoid arthritis treatments.”

Posts to read:

Finding and Evaluating Online Medical Resources – NIH

So You Were Diagnosed with a Chronic Illness: What You Should Do Next

Answering Questions about Being Chronically Ill

My Rheumatoid Arthritis Treatment + How I Got There

Chronic Illness Advice: Keep a Record

What this means: This could be extremely detailed like a diary of what you do in a day or more simple like a record of your pain levels over the course of a day.

Why you should do it: Annoyingly, many medical professionals tend to not take patients at their word unless there is concrete data. Keeping a record can help you have more standing with your medical team. For example, a few months ago I kept a record of how much I slept, how much time I spent commuting, and my fatigue levels. This helped my medical team understand me when I explained how intense my fatigue had been getting.

Another reason why you should keep a record is to help figure out what foods might be contributing to your symptoms. In this case, you would keep a diary of what foods you ate and how much, as well as the intensity of your symptoms that day. This can be helpful for someone with a form of IBS – noting how your diet impacted your symptoms – or with another form of chronic pain. A lot of non-IBS patients can experience pain due to certain foods. For example, gluten, dairy, corn, and soy make my RA and fibromyalgia pain much worse. These records can be helpful for a variety of conditions and reasons.

Sign up for my newsletter and get a free medical symptom organizer to help you prepare for your next medical appointment

Posts:

What Is Self-Advocacy? An Answer + Strategies To Help

Chronically Ill Tips: Preparing for Medical Appointments

Preparing for Chronic Pain Medial Appointments + Printables To Help

Why You Must Track Symptoms of Your Chronic Illness + Freebie To Help

chronic illness advice, chronic illness, chronic pain, chronically ill tips, advice for chronic illness patients, rheumatoid arthritis, arthritis, rheum, RA, fibromyalgia, fibro, POTS, postular orthostatic tachycardia syndrome, dysautonomia, endometriosis, endo, asthma, anemia, chronic anemia, spoonie | #spoonie #chronicillness #chronicpain #rheum #rheumatoidarthritis #autoimmunedisease #autoimmune

Chronic Illness Advice: Analyze Your Symptoms

Why you should do this: Simply being aware of your symptoms isn’t enough when you live with chronic illness; you should also be thinking about what might cause them. This is for a few reasons. 1) If you are able to prevent or reduce your symptoms, it would be great for your life if you could. 2) Doctors don’t know everything! You shouldn’t rely on them to interpret your body. Some of them don’t know enough about what you need them to (because the human body is wild) and some of them are annoying and will just dismiss you/your symptoms. 3) It can take a while to actually see a doctor, even if they are helpful.

How to do this: Take the records that you’ve kept from above and take a good long look at them. What trends are popping out? What thing is especially weird? You can also apply a version of the scientific method; if something isn’t an obvious trend, but it is suspicious, test it. Did you feel more symptoms when you walked longer than usual? Finding patterns can help reduce or prevent your symptoms. And if you’re like me, just trying to find patterns in your symptoms will help your mental health because it feels like you’re doing something.

Posts to read:

How To Figure Out What Triggers or Worsens Pain – Despite Pain

The Lifestyle Changes I Made for my Rheumatoid Arthritis

Chronic Illness Advice: Find Your New Normal

What this means: Unfortunately, for most patients, your life is going to look very different post-illness than it did pre-illness. That’s just the way it is. They could be small changes, like just adding medication, or they could be large changes, like completely altering your life to accommodate for your symptoms, medications, diet, appointments, and more. You are absolutely allowed to grieve giving up your old life, but at some point you need to focus on what your future is going to look like and the changes you need to make so that can happen.

How to do it: This is going to vary wildly by person. But what I would advise everyone to do is make a list of the top 3 things from your pre-illness life that you desperately want to keep and focus on those things. Depending on the illness and the person, you might not be able to keep your favorite thing from your pre-illness life. But if you focus on a couple of things that matter a lot to you, then you can keep the most important things.

I also advise that, if you have the healthcare that supports it and you have the financial ability, you should see a therapist, at least for a little while. It will take some time for you to adjust and you need a safe space to work through your feelings. And there are therapists who specialize in chronic illness! Psychology Today has a great website to help you find a therapist by speciality.

Posts to read:

30 [Mind-Blowing] Hacks That Make Cooking Easier with a Chronic Illness – Chronic Illness Warrior Life

When Your Life Looks Different Because of Chronic Illness – Emily Lofgren

The Impact of Chronic Illness on an Individual

How To Actually Rest When You Take Breaks

Building Self-Confidence When Chronically Ill

Chronic Illness and Mental Health

Is Chronic Illness a Disability?

Hacks for Living with Chronic Illness

College Tips for Disabled Students

5 Items Every Immunosuppressed Person Needs

How To Talk about Your Chronic Illness

4 Questions To Ask Before Traveling with a Chronic Health Problem

Traveling with an Invisible Disability: How To Deal with Rude People

Accepting Your Body with Chronic Illness

What advice would you give a new chronic illness patient?

Like this post? Check out:

Chronically Ill Tips: What To Do if a Doctor Doesn’t Believe You, 4 More Things a Millennial with Arthritis Wants You To Know, So You Know Someone Diagnosed with Inflammatory Arthritis,

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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  1. sarah says

    January 23, 2020 at 8:31 am

    This is just fantastic as are all your chronic illness posts. I’m newly diagnosed with AS and I’ve found your site to be incredibly helpful. I follow you on FB, but I haven’t responded to anything because I’m not telling people yet and certainly not everyone I am friends with on FB. You asked what people would like to see as far as health-related posts. Since I’m new to this, I don’t have any thoughts just yet, but I love what you’ve done so far. Thank you so much for helping those of us with chronic illness.

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Here are some ways I practice self care, aka talki Here are some ways I practice self care, aka talking care of myself AND who I am as a person separate from illness⁣
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This is my Wonderful Things jar. Every day, I write down something wonderful or good that happened that day. ⁣
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I know it looks like I'm forcing Harley to sit like this, but he was making this face before I put my arm around him. Dog snuggle time is the best!⁣
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I got a Kindle this year and it has been amazing. It's so much easier on my body than lugging around books and it makes borrowing from the library a lot easier.⁣
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Yes, I share this all the time, but filling my pill boxes every 3 weeks make it so I stick with all of my medications. But the self-care part of this is that I don't have to take the time to refill a box every single week.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
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1️⃣ A glass jar on a desk with a lot of multi-color post-its inside⁣
2️⃣ Kate has her face in a golden retriever who is slumped onto her. They're in a teal room with a red rug. Kate is a brunette white woman wearing red pants and a gray sweater.⁣
3️⃣ A Kindle on dark mode in Kate's lap⁣
4️⃣ 3 open pill cases on a yellow bedspread ⁣
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#AlmostGreatHealth #AlmostGreatLife #SelfCare #ChronicallyIll #ChronicallyAwesome #SpoonieLife #Spoonie #ChronicLife #ButYouDontLookSick #InvisibleIllness #MentalHealthMatters #RetrieversOfInstagram #Readers #Kindle #WonderfulThings #GratitudePractice
What I Bring To the Doctor _______ Video: a pa What I Bring To the Doctor 

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Video: a pan of an exam room. White text reads “What I Bring To the Doctor ” and the “1. Planner/notebook
2. List of current medications 
3. Notes on my biggest concerns and questions 
4. My kindle for wait time” 
The intro to Maroon 5’s Priceless plays. 

#AlmostGreatHealth #ChronicIllness #ChronicPain #RheumatoidArthritis #SjogrensSyndrome #Fibromyalgia #Endometriosis
💃🏼 Week 17 of #2025Weekly 💃🏼⁣
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1️⃣ She’s married!! ⁣
2️⃣ She married the best person in the world for her!!!!!⁣
3️⃣ I got dressed up! ⁣
4️⃣ The reality of doing fun things with chronic illness and pain is that then you have to recover from the fun things. It took … a while. One million percent worth it, but this is why I don’t do big events on a regular basis. ⁣
5️⃣ And then I had to be a person again for an appointment!⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
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1️⃣ Kate stands hugging Emmie. They're both white woman. Emmie is in a wedding dress and Kate is in a red dress and wearing round tortiseshell glasses.⁣
2️⃣ Kate and Emmie stand next to Matt, Emmie's husband. He is a white man.⁣
3️⃣ Kate takes a mirror selfie. she's in the same red dress but now also wears a jean jacket and holds a cane and mask.⁣
4️⃣ Kate takes a selfie while giving a thumbs up. She looks tired. She's now wearing a pink flowery dress. ⁣
5️⃣ Kate takes a mirror selfie. She's wearing black shorts, a gray shirt, a jean jacket, a blue mask, and black aviator sunglasses. She has a bag over her shoulder and holds a cane.⁣
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#AlmostGreatHealth #AlmostGreatLife #ChronicallyIll #InvisibleIllness #SpoonieLife #RheumatoidArthritis #RheumatoidDisease #Autoimmune #ButYouDontLookSick #AutoimmuneDisease #SpoonieLife #InvisibleIllness #DisabledAndCute
On the one hand, you should always believe what pe On the one hand, you should always believe what people tell you about their bodies.⁣
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On the other hand, I’ve had so much ridiculous and unconnected health things happen that I do understand why people might not believe me.⁣
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⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣I’m Kate, a chronic illness patient and advocate. Follow me for more content for chronic illness patients and their loved ones!⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
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⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ID: Screenshots of a thread posts written by Kate Mitchell | Kate the (Almost) Great with the username katethealmostgreat. ⁣⁣The background is dark teal. All text is what’s above the first black square.⁣⁣
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#AlmostGreatHealth #ChronicallyIll #ChronicPain #Autoimmune #AutoimmuneDisease #RheumatoidArthritis #RheumatoidDisease #SpoonieLife #InvisibleIllness
Last week, I talked about how it surprised me how Last week, I talked about how it surprised me how systemic autoimmune arthritis can be. But something else that surprised me was how much pain can be caused by small things.⁣
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In this picture, I was getting ready to have an MRI on my knee. It has been bothering me a fair amount the last 6+ months, so I'm trying to do something about that. ⁣
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Unsurprisingly, some of the tissue is damaged, but it's not bad. What's probably causing it to bother me so much is a teeny tiny cyst. ⁣
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Baker's cysts are a type of cyst in the knee that are generally caused by arthritis. But having a cyst in my knee means that it's causing pressure on that damaged tissue. ⁣
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The body is a weird thing, and one of these weird things is developing tiny cysts that cause a lot of pain. ⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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ID: Kate takes a mirror selfie. She's a brunette white woman wearing a hospital gown, scrub bottoms, black mask, round tortoiseshell glasses, and round tortoiseshell glasses. ⁣
🌸 Week 16 of #2025Weekly 🌸 ⁣ ⁣ 1️⃣ S 🌸 Week 16 of #2025Weekly 🌸 ⁣
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1️⃣ Spring has sprung … ⁣
2️⃣ … Which means I am overheating! ⁣
3️⃣ A quick view of NYC on my travels ⁣
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1️⃣ A flowering tree on a street ⁣
2️⃣ Kate takes a mirror selfie. She's a brunette white woman wearing a blue t-shirt saying "The Future Is Accessible," a black mask, a green hat reading "Facilities Management), black shorts, a black knee sleeve, and a black knee brace. She holds a pink cane.⁣
3️⃣ A picture of the New York City skyline behind a bridge.⁣
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If I met my newly diagnosed self for coffee ... ⁣
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I tell her how things would get worse before they got better. ⁣
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I'd tell her to stop eating gluten, dairy, corn, soy, and eggs immediately (although that would have been a lot harder in 2010, more than it even is now). ⁣
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I'd tell her that she still needs to keep advocating for herself. ⁣
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I'd tell her that having a diagnosis unfortunately doesn't mean everything automatically falls into place. ⁣
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I'd tell her that she'll develop many more illnesses but her quality of life will actually get significantly better. ⁣
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I'd tell her that she would eventually have to get her right foot fixed, although she does expect that.⁣
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I'd tell her that using a cane is not a sign of failure, but a tool to make life better.⁣
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(I did a sort of tongue-in-cheek post about this a while ago and thought I'd post a more serious one).⁣
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ID: Kate poses for the camera holding a mug with the letter M on it. Kate is a brunette white woman wearing a blue sweater and round tortoiseshell glasses. A white text box reads "If I met my newly diagnosed self for coffee ...". ⁣
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The thing that surprised me the most about autoimm The thing that surprised me the most about autoimmune arthritis is how systemic it is. ⁣
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Like with most things, it's one thing to know the fact and it's something else to experience it. ⁣
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Yes, my joints are affected (a lot). ⁣
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But I've had enough serious infections thats I have to see an immunologist because we need to be aware of my antibodies and I sometimes need help recovering from illnesses. ⁣
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And, yes, I see pulmonology because of my asthma, but we also have to keep an eye out on developing rheumatoid nodules in my lungs. (So far so good!)⁣
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Not to mention that, when I developed POTS, the hospital admitted me to run every heart test to make sure that, at 26, I wasn't experiencing heart failure. ⁣
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Plus, when I developed endometriosis, I also went through a number of GI tests because one theory was that I had ulcerative colitis. ⁣
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Anyway, RA is so much more than "just" joints. If it wasn't, I wouldn't have to kill my immune system every 3 months like I am in this picture.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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ID: Kate takes a selfie in an infusion chair. She is a brunette white woman wearing a Boston Red Sox shirt, blue mask, and round tortoiseshell glasses.⁣⁣
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#AlmostGreatHealth #RheumatoidArthritis #RheumatoidDisease #Rheum #Autoimmune #AutoimmuneDisease #InvisibleIllness #ButYouDontLookSick #Sjogrens #SjogrensSyndrome #POTS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia
🥖 Week 15 of #2025Weekly 🥖⁣ ⁣ This week 🥖 Week 15 of #2025Weekly 🥖⁣
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This week really showed the reason why I started posting weekly round-ups. I manage 7+ illnesses but I also baked bread and worked 34+ hours. This is a normal week for me: baking, doctors, imaging, working. I sometimes feel like I’m not doing anything with my life, but then I think about how I live a *normal* life, which my 16 year old self didn’t think was possible. ⁣
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1️⃣ I made bread! I got to have bread for the first time in 1.5 years! I started having a reaction to a mix and I’m so bad at baking bread that I just held off trying to bake from scratch. ⁣
2️⃣ 🦵doctor’s office selfie. When you have autoimmune arthritis, it's rare to go very long without seeing a joint specialist.⁣
3️⃣ MRI selfie! ⁣
4️⃣ Normal workday selfie.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣
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1️⃣ Fresh-baked bread on parchment paper⁣
2️⃣ Kate takes a selfie. She's a redheaded white woman wearing a blue plaid shirt, gray t-shirt (which isn't fully visible), silver claddagh necklace, black mask, and round tortoiseshell glasses. ⁣
3️⃣ Kate takes a mirror selfie. She's wearing a hospital gown, scrub bottoms, black mask, round tortoiseshell glasses, and round tortoiseshell glasses. ⁣
4️⃣ Kate takes a cheerful selfie. She wears a gray t-shirt, maroon cardigan, and round tortoiseshell glasses. ⁣
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