As someone living with arthritis, you’re well aware of the challenges. Everyday tasks, such as reaching for something on the top shelf, or even buttoning a shirt or blouse can be a struggle. Your sleep is disturbed and you’re finding it hard to work, or even to socialize. The physical, mental and emotional challenges are huge. 

But, not only that, there’s also the fact that others don’t necessarily see that you are in pain, or that you’re extremely fatigued. If you had a broken bone, at least your injury and your pain would be evident. This is perhaps one of the most frustrating aspects of living with arthritis. 

How having an invisible disease can make YOU feel invisible. 

  • You’re in pain – you’re stiff and aching, yet nobody sees it. And, although your family know you have arthritis, you don’t want to complain, meaning their expectations remain the same. They still expect you to cook dinner, to put a wash on and to walk the dog. 
  • You’re exhausted – and your quality of life is being massively impacted, but you’re keeping your condition hidden from people you work with as you don’t want to be labelled.  
  • You’re on public transport – and really need a seat, but feel compelled to give it up to an elderly person, even before someone else offers.  
  • You have a disability parking space – but you appear to be able to walk without major difficulty, so onlookers scowl at you as you return to your car. 
  • You reveal your condition to someone – only to be told you don’t ‘look sick’. 

These are some of the common daily dilemmas facing those living with arthritis. “Arthritis is a difficult condition,” says Arthritis Ireland helpline volunteer, Margaret Curran. “It’s hard to diagnose and, of course, it doesn’t present the same symptoms every day, so sometimes you doubt and question yourself. It’s known as ‘the invisible disease’, and that can feel quite lonely.” 

10 Steps to Feeling Less Invisible 

Asking for help, signaling that you’re struggling and prioritising your own needs are an essential part of coping. Remember, having an invisible disease does not mean that YOU have to become invisible yourself. Follow our pointers for ways to not feel so alone with your condition: 

  1. Be Clear & Honest: When it comes to family members, try to be as honest as possible. They may need reminding of your lived experience of dealing with arthritis, and the specific ways in which your condition limits you. When you’re experiencing a flare-up, ask for help, including any necessary adjustments to the way things are done at home. 
  2. Ring Our Helpline (0818 252 846): The volunteers on the Arthritis Ireland helpline have first-hand experience of arthritis and can offer emotional support in the strictest confidence. “Often, it’s not just about giving information,” says helpline volunteer, Margaret Curran. “It can simply be about helping that person at the end of the line to feel heard and understood.”  
  3. Talk it Over: If you do find that your condition is getting you down, talk it over with loved ones, or with your doctor or nurse specialist. Sharing our worries will help you to feel less alone and more understood. Plus, if you don’t express - honestly and clearly - how you are feeling, how can you expect your partner or children to understand?  
  4. Consider counselling: To help deal with the low mood, anxiety or anger that can be associated with having an invisible disease, ask your GP for a list of local recommended therapists, but do make sure they are registered with an appropriate body, such as the Irish Association for Counselling and Psychotherapy. For GMS cardholders, students or those who are unemployed, there are free or discounted counselling options available through the HSE's national counselling service or the Department of Health funded 
  5. Put Boundaries in Place: With some people, no matter how many times you tell them, they don’t seem to take your condition (and all the related challenges you face) on board. That’s hurtful and frustrating. Try to foster an attitude of protecting yourself and your energies by learning how to say ‘no’. Healthy boundaries put you back in control, in that you decide what you do and do not want to do (read our other blog: How to Set Healthy Boundaries). 
  6. Consider being More Open: Consider, when out in public, wearing a lanyard (or carrying a card) which reads ‘I have a hidden disability; please be patient’. If someone tells you that you don’t ‘look sick’, be honest with them and explain that you do, in fact, feel very unwell at times.  
  7. Tell a Trusted Colleague: When it comes to work colleagues, remember that hiding your condition and struggling on in silence could make your arthritis worse, particularly during a flare-up, so do consider confiding in colleagues you trust, particularly if you think they will support you. Your manager may need to sign off on expenses relating to making your work station more comfortable, so it’s worth getting them on board also (listen to our podcast  work + arthritis).  
  8. Educate Others: It shouldn’t be your role, but there are a lot of myths out there about arthritis. Direct anyone interested to the booklets section of our website, where we have all the information needed to help understand conditions including osteoarthritis, rheumatoid arthritis and psoriatic arthritis. It’s nice to express your gratitude, too, when someone shows interest in trying to understand your condition more. This can be especially useful for family members or work colleagues, with whom you interact on a daily basis.  
  9. Connect with Others: Support communities, such as our online Facebook Group can offer a welcome sense of understanding, so that you don’t feel so alone. Also, attending one of our courses will bring you in contact with others experiencing the same challenges. You could meet lifelong friends, or a group that you decide to connect with regularly in order to provide one another with much-needed support.  
  10. Get on Top of the Pain: Pain is debilitating, but it’s also invisible. Don’t suffer alone – consider signing up for our Behind the Pain course, designed specifically for those living with daily pain. This is a six-week course, held by a qualified psychologist, which looks at new tools and approaches to help manage pain. Those who complete the course say that taking the time and space to address the emotional aspects of arthritis can be a huge support to them.  

Remember – just like cyclists, don't be invisible, be SEEN! 

Although arthritis is ‘an invisible disease’, you don’t have to be. You deserve to be seen and to be heard, and to live the very best life you possibly can.