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living with psoriatic arthritis living with

living with

What should I tell my friends and family?

Talking to friends and family about chronic illness can be challenging. It is important to understand how you’re feeling emotionally, and how much you’re willing to share; you may get opinions, judgements and advice, which may or may not be informed by actual understanding of your condition and could result in a difficult interaction.23 It is however important to discuss your condition with family and friends; it may help people understand why you’re unable to see them or attend social activities, and discussing your condition may also provide some stress relief.17

Educating yourself prior to discussing your condition should help you to convey information on psoriatic arthritis better and more accurately. The Psoriasis and Psoriatic Arthritis Alliance (PAPAA)and Versus Arthritis websites have information you may find useful. Stating it isn’t contagious is a particularly common way to begin discussions to avoid fear arising from ignorance.24 Once people know you have psoriatic arthritis, letting them know what you are doing to prepare for activities such as taking medication may help their understanding. Suggesting alternatives to social activities you find difficult should help people to become more aware of what you find difficult, and that you would like to see them if you can work something out where your condition isn’t going to make it difficult or impossible.24

Informing family and friends of the kind of treatment you’re receiving, what the possible side effects are, and what you require in terms of medication storage in the fridge may also be helpful, so they understand if you experience side effects and what they should or should not do with your medication, such as they shouldn’t take it out of the fridge.

What should I tell people at work?

When applying for a job, you do not have to disclose your condition, and the prospective employer cannot ask you about any health conditions or sickness absence you may have had. If you require a medical examination or questionnaire upon being offered a job, the offer will be withdrawn only if they can prove you won’t be able to do your work after reasonable adjustments are implemented.19 If you decide to tell your current employer about your psoriatic arthritis, they must follow the Equality Act 2010 and implement reasonable adjustments to help you manage your condition at work. These may include the use of special equipment, allowing short and regular breaks, reallocating duties you find difficult to perform and having time off to attend medical appointments.25

Communication is key, so managers and co-workers understand your condition and so adjustments can be made. Think carefully about when to discuss your psoriatic arthritis and research beforehand, so you can suggest changes that could be made to help you become more productive.21

If you meet with your manager when neither of you are under pressure, they may be more receptive. Describe simply and plainly your symptoms and how they may affect your work, framing the discussion in terms of how reasonable adjustments such as assistive devices will not only benefit you, but your colleagues and the company, through increased wellbeing and productivity.21

If your colleagues understand your condition and how it affects you, they may be more accepting when your psoriatic arthritis interferes with your ability to work. If you feel like work is too difficult, try to help people understand that pushing through the pain may trigger exhaustion and stress, worsening your condition and productivity in the long-term.21

What should I tell my healthcare professional?

You may have questions about your condition or your treatment when talking to your healthcare professional. These could include:22

  • Can you tell me why you have decided to offer me this particular type of treatment?
  • What are the risks and benefits of this treatment?
  • Is there any other treatment that I should not use while using this treatment?
  • If I am unwell should I stop this treatment?
  • What should I do if I get any side effects? (Who should be my first point of contact, for example, should I call my GP, my dermatology nurse specialist or go to the accident and emergency (A&E) department at a hospital?)
  • Can you provide any information or advice for my family or carers?
  • Is there anyone I can talk to about my feelings about psoriatic arthritis?
  • Is there some other information (a leaflet or website) to help me understand my psoriatic arthritis?

There are certain situations where you should contact your healthcare professional. Tell your healthcare professional:

  • If you experience side effects (this includes any possible side effects not listed in the side effects section or the Patient Information Leaflet)
  • If your psoriatic arthritis is not improving (if your psoriatic arthritis hasn’t responded to Stelara® by week 28, your healthcare professional may decide to stop or change your treatment)