Five Things I Wish I’d Known Before Becoming Chronically Ill

Finding out you have a chronic illness — one that will, by definition, never go away — changes things profoundly, both for you and those around you.

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Seven years ago, I got sick and I never got better.

What I thought was me being run down from working shifts in a hotel and overdoing it in the gym turned out to be a whole host of autoimmune conditions that had not been picked up. That was until one day I ended up in A&E as a Heart Attack patient.

At the time I was twenty five years old – terrified! But thankfully had a wonderful team of nurses and doctors that saved my life.

Following that hospital admission I was diagnosed with Psoriatic Arthritis, Asthma, Hypothyroidism (with a Goitre,) and Anemia.

Since that hospital stay, I’ve had Bronchoscopies, biopsies, CT scans, MRI scans, X-rays, DEXA scan, countless blood tests, antibiotics, anti-inflammatories, COX-2 inhibitors, steroids, DMARD’s, biologics and many, many other tests, drugs and hospital admissions.

My conditions are still not completely managed and I am currently waiting to start a new class of medication called Jak inhibitors. 

When I was originally diagnosed, I didn’t realise how much my life would change. There’s no conversation about that foggy space between the common cold and terminal illness, where your disease won’t go away but won’t kill you.

None of us know what “chronic illness” means until we’re thrown into being sick forever ourselves.

Chronic illness not only causes painful physical symptoms, but also mental ones that linger even when the disease is well controlled. There is trauma related to certain aspects of illness or treatment, and fear of outcomes like death or disability, For many people, there are financial uncertainties. Plus, there’s anxiety over loss of autonomy and control.

Chronic illness also increases the risk of depression, a 2007 World Health Organization survey  found a higher likelihood of depressive episodes among those with chronic health conditions than without.

It’s hard to be a good employee when you need extended periods off. It’s hard to be a good friend when you cancel plans last minute. It’s hard to be a good partner when you barely have the energy to get out of bed. No matter how much you try to explain, people expect you to get better — and when you don’t, they resent you, consciously or not. Some relationships end entirely, casualties of an unfair, misunderstood and often invisible illness, while some get stronger as you find your true support system.

But most significantly of all, your relationship with yourself changes. You grieve a version of yourself that doesn’t exist anymore, and a future version that looks different than you’d planned.

You might have to give up career goals, hobbies and family plans, learning a “new normal” in their place. In trauma therapy this is called ‘integration,’ the task of integrating a new reality into one’s life and worldview. This emotional work can look a lot like grief therapy for a passing loved one.

Try to be patient as you get to know the new version of yourself.

People are compelled to offer advice about chronically ill bodies because they’re convinced a fix must exist. Here are a few of the things I’ve been told, unsolicited, to try over the years: yoga, meditation, essential oils, acupuncture, CBD oil, prayer, bone broth and [fill in the blank with the latest fad]. These work great in conjunction with medical treatment — my rheumatologist recommends regular massages, for example — but the advice is offered as a cure or a better alternative to whatever I’m already doing. And let’s face it, no amount of broth is going to fix my immune system or repair my joints.

Chronically ill people research their diseases like crazy! Often trying more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure. So unless someone asks for your advice, don’t offer it – period!

Maybe it’s because I naturally have a thirst for knowledge, but when I was diagnosed, I went straight into research mode . Learning as much as I could helped me feel a sense of control, so I bought books and spent hours reading studies and forums online. I made lists of questions for my doctors, I expected my friends and family to be as gung-ho as I was, but turns out, most of them never even Googled my disease. It was up to me to learn and teach — friends, family, bosses, partners — through conversations, books with passages marked, emails highlighting new research, and social media posts.

Chronic illness is really lonely.

Loved ones try their best, but your fellow “spoonies,” as they’re affectionately called, intimately know the challenges of forever sickness and thanks to the internet, it’s easier than ever to connect with them in support groups and chronic illness communities.

It took me five years to join an online community. I pridefully thought I could go it alone, but that was like being lost at sea and ignoring a rescue ship. Now, I tell all newly diagnosed folks to join a support group right away — it doesn’t just help you feel less alone, but it connects you with resources and provides a place to ask questions and share stories without shame.

Living with chronic illness makes every day a little harder, but it also makes every day a little sweeter. Though I don’t know what my future holds, I’m overwhelmed with a gratitude I didn’t have before my diagnosis — some days I marvel at just being alive!

The challenge is steep, but the mission is to grow into this challenge, create meaning, and be the best person you can be.

Rachel x

A guide to living with and treating psoriatic arthritis

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As some of you know I suffer from psoriatic arthritis, and although I have touched on this in previous posts I wanted to share in more depth about my experience with arthritis and to offer self care advice and talk about treatment options for this invisible and often debilitating illness.

What is psoriatic arthritis?

Psoriatic arthritis is a type of arthritis that develops in some people with the skin condition psoriasis. It typically causes affected joints to become inflamed (swollen), stiff and painful.

Like psoriasis, psoriatic arthritis is a long-term condition that can get progressively worse. In severe cases, there’s a risk of the joints becoming permanently damaged or deformed, which may require surgical treatment.

However, with an early diagnosis and appropriate treatment, it’s possible to slow down the progression of the condition and minimise or prevent permanent damage to the joints.

Symptoms of psoriatic arthritis

The pain, swelling and stiffness associated with psoriatic arthritis can affect any joint in the body, but the condition often affects the hands, feet, knees, neck, spine and elbows.

The severity of the condition can vary considerably from person to person. Some people may have severe problems affecting many joints, whereas others may only notice mild symptoms in 1 or 2 joints.

I currently have 14 joints affected, two of which are synovitic and my disease is classed as active and severe.

There may be times when symptoms improve (known as remission) and periods when they get worse (known as flares).

Flares can be debilitating, very painful and are difficult to predict, but they can be managed with medication when they do occur.

When to seek medical advice

See your GP if you experience persistent pain, swelling or stiffness in your joints.

If you’ve been diagnosed with psoriasis, you should have check-ups at least once a year to monitor your condition. Make sure you let your doctor know if you’re experiencing any problems with your joints.

Causes of psoriatic arthritis

Between 1 and 2 in every 5 people with psoriasis develop psoriatic arthritis.

It usually develops within 10 years of psoriasis being diagnosed, although some people may experience problems with their joints before they notice any symptoms affecting their skin.

Like psoriasis, psoriatic arthritis is thought to occur as a result of the immune system mistakenly attacking healthy tissue.

However, it’s not clear why some people with psoriasis develop psoriatic arthritis and others don’t.

Diagnosing psoriatic arthritis

If your doctor thinks you may have arthritis, they should refer you to a rheumatologist (a specialist in joint conditions) for an assessment.

The British Association of Dermatologists website has information on the psoriasis epidemiology screening tool (PEST) (PDF, 209kb). This is a questionnaire you may be asked to fill out, which helps your doctor decide if you need a referral.

A rheumatologist will usually be able to diagnose psoriatic arthritis if you have psoriasis and problems with your joints.

They’ll also try to rule out other types of arthritis, such as rheumatoid arthritis and osteoarthritis.

A number of tests may be carried out to help confirm a diagnosis, including:

  • Physical examination
  • blood tests to check for signs of inflammation in your body and the presence of certain antibodies found in other types of arthritis
  • X-rays or scans of your joints

Treating psoriatic arthritis

The main aims of treatment will be to relieve your symptoms, slow the progression of the condition and improve quality of life.

For most people, this involves trying a number of different medications, some of which can also treat the psoriasis. Ideally, you should take one medication to treat both your psoriasis and psoriatic arthritis whenever possible.

The main medications used to treat psoriatic arthritis are summarised below and include:

  • non-steroidal anti-inflammatory drugs (NSAIDs)
  • corticosteroids
  • disease-modifying anti-rheumatic drugs (DMARDs)
  • biological therapies

Non-steroidal anti-inflammatory drugs (NSAIDs)

Your GP may first prescribe non-steroidal anti-inflammatory drugs (NSAIDs) to see if they help relieve pain and reduce inflammation.

There are two types of NSAIDs and they work in slightly different ways:

  • traditional NSAIDs, such as Ibuprofen, Naproxen or Diclofenac
  • COX-2 inhibitors (often called coxibs), such as Celecoxib or Etoricoxib

Like all medications, NSAIDs can have side effects. Your doctor will take precautions to reduce the risk of these, such as prescribing the lowest dose necessary to control your symptoms for the shortest time possible.

If side effects do occur, they usually affect the stomach and intestines, and can include indigestion and stomach ulcers. A medication called a proton pump inhibitor (PPI) will often be prescribed alongside NSAIDs – a PPI helps protect your stomach by reducing the amount of acid it produces.

If NSAIDs alone aren’t helpful, some of the medications below may be recommended.

Corticosteroids

Like NSAIDs, corticosteroids can help reduce pain and swelling.

If you have a single inflamed or swollen joint, your doctor may inject the medication directly into the joint. This can offer rapid relief with minimal side effects, and the effect can last from a few weeks to several months.

Corticosteroids can also be taken as a tablet, or as an injection into the muscle, to help lots of joints. However, doctors are generally cautious about this because the medication can cause significant side effects if used in the long term, and psoriasis can flare up when you stop using it.

Disease-modifying anti-rheumatic drugs (DMARDs)

Disease-modifying anti-rheumatic drugs (DMARDs) are medications that work by tackling the underlying causes of the inflammation in your joints.

They can help to ease your symptoms and slow the progression of psoriatic arthritis. The earlier you start taking a DMARD, the more effective it will be.

Leflunomide is often the first drug given for psoriatic arthritis, although sulfasalazine or methotrexate may be considered as alternatives.

It can take several weeks or months to notice a DMARD working, so it’s important to keep taking the medication, even if it doesn’t seem to be working at first.

Biological treatments

Biological treatments are a newer form of treatment for psoriatic arthritis. You may be offered one of these treatments if:

  • your psoriatic arthritis hasn’t responded to at least two different types of DMARD
  • you’re not able to be treated with at least two different types of DMARD

Biological drugs work by stopping particular chemicals in the blood from activating your immune system to attack the lining of your joints.

Some of the biological medicines you may be offered include:

  • adalimumab
  • apremilast
  • certolizumab
  • etanercept
  • golimumab
  • infliximab
  • secukinumab
  • ustekinumab
  • ixekizumab
  • tofacitinib

The most common side effect of biological treatments is a reaction in the area of skin where the medication is injected, such as redness, swelling or pain, although these reactions aren’t usually serious.

However, biological treatments can sometimes cause other side effects, including problems with your liver, kidneys or blood count, so you’ll usually need to have regular blood or urine tests to check for these.

Biological treatments can also make you more likely to develop infections. Tell your doctor as soon as possible if you develop symptoms of an infection, such as:

  • a sore throat
  • a high temperature (fever)
  • diarrhoea

Biological medication will usually be recommended for three months at first, to see if it helps. If it’s effective, the medication can be continued. Otherwise, your doctor may suggest stopping the medication or swapping to an alternative biological treatment.

Complementary therapies

There’s not enough scientific evidence to say that complementary therapies work in treating psoriatic arthritis. However I have benefited from acupuncture, yoga, floating, massage and using infrared saunas to help manage pain and inflammation.

Complementary therapies can sometimes react with other treatments, so talk to your GP, specialist or pharmacist if you’re thinking of using any.

There’s also not enough evidence to support taking any kind of food supplement as treatment, although taking some supplements may help and it is best to ask your GP or rheumatologist for advice.

You can also help yourself by: