A rare-disease diagnosis is a shock.

This text is written from the perspective of the site’s author — a person diagnosed in their twenties, at the start of a career, with no prior history of chronic illness. Your experience may be different. But there are patterns that recur in most M35.4 patients (and in other autoimmune diseases), and those are what this article is about.

The shock of diagnosis

The first weeks after hearing the M35.4 diagnosis are very difficult for most patients, even when the relief of “finally I know what this is” is real. The following emotions mix:

• Relief — the uncertainty is over, there is a plan of action
• Fear — is it a lifelong disease, will I be able to work, will I be able to have children, am I going to die
• Body shame — your body has stopped being entirely “yours”; it is now a subject of tests and interventions
• Anger — often unconscious, sometimes directed at doctors who “delayed”
• Sadness — often vague, non-specific, but deep

All of this is a normal reaction to a life change of this scale. You are not “weak” for feeling it. You are not “hysterical” — people with chronic illnesses statistically have a higher risk of depression and anxiety than the general population, for very concrete biological and psychosocial reasons.

The isolation of a rare disease

M35.4 has an unusual feature among chronic illnesses: it is so rare that there is no “group”. Unlike diabetes, rheumatoid arthritis, or cardiology — where there are dozens of support groups, patient organisations, foundations and events — for M35.4 there is no national patient organisation, no EF march, no EF awareness day, no EF billboards.

From a psychological perspective this has two consequences:

• No natural validation — nobody around you knows the disease. Every conversation starts with “what is that, actually?”
• No role models — in common diseases you see how others live: they work, have families, travel. In M35.4 there are no such role models in your immediate environment

What works against this isolation:

• International online groups (Reddit r/EosinophilicFasciitis, Facebook groups, Discord) — a small community, but active, with many people in a similar situation
• The international medical vocabulary — when you meet an M35.4 patient from another country, you have an immediate shared language
• The Stories section of this site, where patients share their accounts — reading them helps you see yourself in a broader context

Steroids and mood — a biological storm

Steroids (especially prednisone at doses > 20 mg/day) have a strong and often underestimated effect on mood. The most common psychiatric effects:

• Insomnia and restlessness in the first weeks — typical
• Euphoria and excess energy in some patients — superficially a “good” effect, but often misleading
• Irritability and sudden anger — steroids lower the threshold for emotional reactivity
• Post-steroid depression — appears later, during dose reduction (taper); sometimes lasts a few weeks
• Anxiety states — heightened in those with a predisposition
• Rarely: post-steroid psychosis — very rare, but described; requires immediate consultation

The hardest thing is that you do not know how much of this is “you” and how much is a chemical storm caused by the drug. A classic patient quote: “I don’t know if I’m sad because I have the disease, or because I’m on steroids.”

What helps:

• Tell your doctor about your mood — it will influence dosing decisions
• Tell those close to you what you feel — so they do not take your reactions personally
• Keep a mood diary — a short note once a day. Helps you see patterns over time
• Do not drink alcohol — it amplifies every psychological effect of steroids
• Remember that this passes — most of the psychological effects subside as the dose is reduced

Acceptance vs fighting — a false dichotomy

In popular culture you often hear two extreme models of coping with illness: “fight” (as if against an enemy, aggressively, “I won’t give up”) or “accept” (zen, “this is now part of me”, reconciliation). Both make sense in specific moments. Neither is enough on its own.

From the patient’s perspective it looks more like a daily negotiation:

• With what can be changed (treatment, lifestyle, rehabilitation) — you act
• With what cannot be changed (the disease itself, its rarity, the uncertainty) — you accept
• And you learn to tell these two categories apart — that is the hardest skill

It also helps to shift from “why me?” to “what now?”. The first has no answer. The second has — plenty.

When to seek professional help

There is no single threshold, but there are signals that suggest consulting a psychologist or psychiatrist:

• A low mood lasting over 2 weeks without a clear cause
• A loss of joy in things that used to give pleasure (anhedonia)
• Sleep or appetite disturbance that cannot be explained biologically
• Recurring thoughts of death or suicide (even “passive” ones — like “it would be better if I didn’t exist”)
• Impaired functioning at work or in relationships because of mood
• Difficulty taking medication, missing appointments, self-sabotaging treatment
• Anxiety / panic attacks before medical visits
• A feeling that “nobody understands” — persisting despite attempts to talk to those close to you

What really helps

A list of concrete things that work for many patients with chronic illnesses (M35.4 included):

• Cognitive behavioural therapy (CBT) — the best-documented psychotherapy for depression, anxiety, and adaptation to chronic illness. Also available online
• Mindfulness / meditation — documented in lowering anxiety and depression in chronic illness. 10 minutes a day is enough to begin
• Physical movement — in the phase that allows it, every 30 minutes of daily activity has an antidepressant effect comparable to medication in mild and moderate depression
• Social support — at least 1–2 people you can tell “today is bad” without having to explain
• Ritual — something you do every day regardless of the state of the disease: morning coffee, evening reading, a walk. Ritual provides the structure the mind needs in uncertainty
• A goal — something you are looking forward to. Not necessarily grand: a weekend with loved ones, a project, a book to write, learning a language
• Antidepressants — if indicated by a psychiatrist. Not a shame. They work. They do not interact in clinically significant ways with most M35.4 medications (but always tell the psychiatrist about those medications)

The single most important thought of this article, if I have to condense it: a rare-disease diagnosis is not only a medical but also a psychological life change. The sooner you take that in and include taking care of your mind in your “treatment”, the better you will function — regardless of which phase of the disease you are in.